Health Industry Archives - KFF Health News https://kffhealthnews.org/topics/health-industry/ KFF Health News produces in-depth journalism on health issues and is a core operating program of KFF. Fri, 24 Apr 2026 18:36:08 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.5 https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Health Industry Archives - KFF Health News https://kffhealthnews.org/topics/health-industry/ 32 32 161476233 In Connecticut, Doctors and Dentists Are More Likely Than Hospitals To Sue Patients https://kffhealthnews.org/health-care-costs/the-week-in-brief-connecticut-doctors-dentists-medical-debt/ Fri, 24 Apr 2026 18:30:00 +0000 https://kffhealthnews.org/?p=2230134&preview=true&preview_id=2230134 How often do hospitals, physicians, and other providers sue patients over unpaid bills? 

That’s a question we’ve asked a lot over the last several years at KFF Health News. Since 2022, we’ve been working with newsrooms around the country, such as the Connecticut Mirror, to explore the scale and impact of America’s medical debt crisis. It’s part of a project we call “Diagnosis: Debt.” 

We know that this type of debt burdens many people — about 100 million adults, according to a nationwide survey we did. But in most states, it’s almost impossible to gauge how many patients are getting taken to court over health care debt. 

Connecticut’s court data is different. 

It offered an opportunity to explore just how many people are being sued over medical and dental bills, who is suing patients, and for how much. Over the past year, I’ve collaborated with CT Mirror reporters Katy Golvala and Jenna Carlesso to learn more about the people facing legal actions.

What we found was surprising … and sad. This week, we shared the first of our articles, which explores how hospitals have been supplanted by physician groups and other medical and dental providers as the most aggressive bill collectors.

That’s a major reversal from five years earlier, when hospital system lawsuits made up three-quarters of health-related collection cases in the state’s courts.

The shift is moving medical debt collections into a less regulated realm. Most hospitals, because they are tax-exempt nonprofits, must make financial aid available to low-income patients and follow federal regulations that limit aggressive collection activities. Other medical providers, such as private medical groups, are generally exempt from these rules. 

Lawsuits can lead to garnished wages, liens on homes, and hundreds of dollars of added debt from interest and court fees. They also pile additional financial strains on struggling families, prevent patients from getting needed care, and sap trust in medical providers.

“It’s really messed up,” said Allie Cass-Wilson, a nurse in Bristol, Connecticut, who was sued over a $1,972 debt by an OB-GYN practice where she’d been a patient years earlier. She did not contest the lawsuit, court records show. Still, she asked: “How can they do that to people?”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-care-costs/the-week-in-brief-connecticut-doctors-dentists-medical-debt/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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A ‘Barbaric’ Problem in American Hospitals Is Only Getting Bigger https://kffhealthnews.org/health-industry/emergency-room-ed-boarding-hospital-beds-long-waits-crisis/ Fri, 24 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2230362 In the last months, weeks, and days of his life, “I will not go to the emergency room” became my husband’s mantra. Andrej had esophageal cancer that had spread throughout his body (but not to his ever-willful brain), and, having trained as a doctor, I had jury-rigged a hospital at home, aided by specialists who got me pills to boost blood pressure; to dampen the effects of liver failure; to stem his cough; to help him swallow, wake up, fall asleep. 

“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” nurse-to-patient ratios in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a moral hazard for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate a program that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/emergency-room-ed-boarding-hospital-beds-long-waits-crisis/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Watch: Acknowledging Health Care’s Great Divide https://kffhealthnews.org/health-industry/health-care-policy-political-divide-david-blumenthal-interview/ Thu, 23 Apr 2026 19:00:58 +0000 https://kffhealthnews.org/?p=2230749 In this “How Would You Fix It?” interview, Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast, sat down with David Blumenthal — a physician, health policy expert, former Obama administration official, and author — to explore the dynamics that make fixing the nation’s health care system so difficult.

They discussed the pivotal role the president of the United States plays in health policy — whether it is building support for or opposition to new plans and proposals. “Presidents have a level of authority which is often underappreciated, especially in health care,” Blumenthal said.

Blumenthal and Rovner also discussed the historical reasons the U.S. has been unable to enact universal health care, incrementalism versus sweeping change, and what he described as “the dance” between proponents and opponents — usually a clear party-line split between Democrats and Republicans — of major health care reforms.

Today, the split seems to have come to a head, as public health, science, and expertise are being viewed by one end of the political spectrum as “the opposition,” Blumenthal said, which will complicate efforts. Still, he outlined ideas for moving forward.

An abbreviated version of this interview aired April 23 on Episode 443 of What the Health? From KFF Health News: “RFK Jr. vs. Congress.”

Blumenthal’s latest book, Whiplash: From the Battle for Obamacare to the War on Science, co-written with James A. Morone, offers a behind-the-scenes look at how three presidential administrations pursued very different health policy goals.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/health-care-policy-political-divide-david-blumenthal-interview/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Medigap Premiums Leap, and Consumers Have Few Alternatives https://kffhealthnews.org/medicare/medigap-medicare-advantage-premiums-rate-increase-few-alternatives/ Thu, 23 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2228699 After decades of selling insurance, Illinois-based broker John Jaggi had never seen anything like it.

More than 80 of his customers who were enrolled in the same Medicare supplemental plan from the insurer Chubb got hit last August with a 45% increase.

“In my 49 years of doing biz as a broker, I’ve never seen a premium increase be effective immediately on everyone, instead of on their policy anniversary,” said Jaggi, whose brokerage scrambled to find more affordable options for clients. The policies pick up deductibles and other costs not covered in traditional Medicare, and without one there is no upper limit on how much a consumer might owe each year.

While 45% was an unusually big jump, Jaggi and other brokers say double-digit premium increases for Medicare supplemental, or Medigap, policies are becoming the norm.

A Chubb spokesperson did not respond to requests for comment on the increase.

More than 12 million people — about 43% of those in traditional Medicare — buy a Medigap policy. Others rely on some sort of retiree employer coverage or a different backup. About 13% of people in traditional Medicare don’t have supplemental coverage, according to KFF, meaning they could be vulnerable to large costs if they have a serious illness.

In the supplemental market, following big increases last year, rates appear to be rising again. In early 2026 filings with state insurance commissioners from Aetna, Blue Cross Blue Shield, Cigna, Humana, Mutual of Omaha, and UnitedHealthcare, rate increases for Plan G policies — the most commonly purchased supplement type — ranged from just over 12% to more than 26% in the first quarter, according to Nebraska-based consulting firm Telos Actuarial.

“While this is a small dataset across a select number of states, it’s an indication that carriers are looking to correct their premium rates in light of upward pressure on their claims experience,” said Brett Mushett, a consulting actuary with Telos.

Climbing Numbers

Premium rates vary based on the type of coverage chosen, where a beneficiary lives, and their age. For Plan G coverage, beneficiaries paid an average monthly premium of $164 in 2023, according to KFF. That amount has likely risen since.

“In some states, like Ohio, Medicare supplements for years would have a 3% to 5% year-over-year increase. Now it’s 10% to 15%,” said Amanda Brewton, owner of Medicare Answers Now, a marketing organization whose clients are sales agents.

In Alaska, Premera Blue Cross raised the premiums on its Plan G policies by nearly 12% for this year, according to rate sheets provided to KFF Health News by insurance agent Patricia Mack, who said another insurer raised rates by nearly 13%.

For example, a 65-year-old woman who last year would have been charged $172 a month for a Plan G policy would now face a monthly rate of $192, said Mack, who owns Alaska Insurance Benefits in Wasilla.

Premera spokesperson Courtney Wallace said in an email that Medicare makes changes to deductible and copayment rates each year, which affects supplemental plans that cover those increasing amounts.

Wallace also noted that the insurer saw higher medical service use among its members, “which further drove claims costs and ultimately impacted premiums.”

Agents and policy experts blame a range of factors for rising premiums: an increase in the use of medical services by beneficiaries; the aging of the population; increases in labor and medical costs; rules in some states governing Medigap plans; and people’s enrolling in — or getting out of — private Medicare Advantage plans.

“Five years ago, it was exceedingly uncommon to have a carrier with a rate increase of more than 10%. Now it’s very uncommon to see a rate increase below 10%, and it’s not uncommon to see it over 20%,” said Chalen Jackson, vice president for government affairs at Integrity, a Dallas-based company that sells life and health insurance.

Jaggi, who co-owns Jaggi Petry Insurance & Investments in Forsyth, Illinois, along with his daughter, said he eventually found other options for many of those 80-plus clients with the large increase, which came from an insurer that had previously been the lowest-cost option. But it wasn’t easy — and continuing increases are expected.

“These are unbelievable increases,” said Jaggi, who said he is seeing premium hikes exceeding 15% this year across a range of insurers.

Policy experts have outlined possible solutions, including for Congress to cap out-of-pocket costs for Medicare beneficiaries or subsidize the purchase of Medigap coverage.

“Traditional Medicare is the only federal health insurance program without an out-of-pocket cap,” Sen. Ron Wyden (D-Ore.) wrote in an email, adding that the program “needs to be updated and strengthened to protect the Medicare guarantee for American seniors.”

But making changes to Medicare that require congressional approval is unlikely in the current legislative environment, especially because adding an out-of-pocket cap would add costs to the federal budget.

How This Plays Out

People generally qualify for Medicare when they turn 65. Beneficiaries have six months after they initially enroll in the traditional fee-for-service program to purchase a Medigap plan at standard rates without having to answer health-related questions.

Strict rules then kick in around when beneficiaries can enroll in or switch Medigap coverage and options become much more limited, with each one generally involving trade-offs or tough choices.

At least 16 states have what’s known as a “birthday rule,” which requires insurers once a year to allow people enrolled in a Medigap plan to change to different supplemental coverage — usually around their birthdays — without being medically underwritten. Those rules can help consumers, including those with health conditions, to switch.

An additional four states — Connecticut, Massachusetts, Maine, and New York — require insurers to offer at least one Medigap policy to all applicants either year-round or during an annual enrollment period, depending on the state. Changes are allowed no matter the person’s health.

Another option for those facing high Medigap costs is to leave traditional Medicare and enroll in a private-sector Medicare Advantage plan, which have out-of-pocket caps. But joining one means beneficiaries must generally rely on a set of in-network doctors and hospitals. And if they change their mind and want to go back to traditional Medicare, they have only a 12-month window in which to purchase a Medigap plan without passing health questions. After that, it can be more difficult.

“A lot of people don’t know that if they are in Medicare Advantage for a year, they can get turned down by a Medigap plan or charged really high premiums because of a preexisting condition, which for many people effectively traps them in MA plans,” said Brian Keyser, a research associate at the liberal Center for American Progress and co-author of a recent report on the issue.

There are some exceptions. For example, if a Medicare Advantage plan withdraws from a market or leaves the Medicare program, its enrollees can qualify for a supplemental plan without being asked health questions or charged more for having preexisting conditions.

For this year alone, about 2.6 million people lost Medicare Advantage coverage when their insurer pulled out of their markets, according to KFF, and more than a million lost coverage for 2025. Many switched to other MA plans, but “somewhere around 440,000 of those people did go to a Medicare supplement policy,” sometimes because there was no other MA plan in their area, said George Dippel, president of Deft Research, a Minneapolis-based market research organization focused on insurance for older people. Deft is part of Integrity, the Dallas company.

Some Medicare experts note that anytime insurers enroll people whose health status they can’t consider — whether because of birthday rules or because their Medicare Advantage plan left the market and thus qualified them for an exemption from medical underwriting — it potentially exposes them to more health care utilization and higher costs, making them more likely to increase premiums across the board to offset the possible financial hit.

Another option mentioned by brokers for people looking to lower their costs is to consider one of the two types of Medigap plans that come with a deductible, which is currently just under $3,000 for a year. Those plans charge far lower monthly premiums than Medigap plans that pick up a much larger portion of annual amounts people must pay toward their Medicare services.

Still, “a lot of people are not comfortable with a $3,000 deductible,” Mack said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/medicare/medigap-medicare-advantage-premiums-rate-increase-few-alternatives/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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California Lawmakers Seek Protections for Patients in ICE Custody https://kffhealthnews.org/health-industry/ice-custody-immigrant-patient-protection-california-legislation/ Wed, 22 Apr 2026 12:40:00 +0000 https://kffhealthnews.org/?p=2229421 California lawmakers alarmed by the treatment of people brought to hospitals by federal immigration agents want to strengthen protections for detained patients receiving care at medical facilities, including by making it easier for their families and attorneys to find them.

Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by KFF Health News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

KFF Health News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, SB 915, would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

SB 1323, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

KFF Health News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Montana Moves Ahead With Doula Pay but Warns Medicaid Cuts Still May Come https://kffhealthnews.org/medicaid/doula-care-pregnancy-medicaid-montana-budget-cuts/ Wed, 22 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2229052 Montana officials said they are moving forward with plans to allow Medicaid to pay doulas, reversing a previous statement that budget problems had prompted them to pause the effort to reimburse the birth workers.

But officials warned that all optional Medicaid services are still under review as the state health department looks for cuts to offset a shortfall driven by higher-than-expected Medicaid costs.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the agency is preparing a request to the federal government to add doula care to the state’s Medicaid program. It would cost the state about $118,000 in its first year to provide doula Medicaid reimbursements, according to state estimates.

His April 15 comments came three weeks after department officials told KFF Health News that the state budget deficit had put those plans on hold. Ebelt denied that a final decision had been made in March to scrap the doula Medicaid payments, which state lawmakers approved in a bill last year. The coverage is “now proceeding as planned,” he said.

“At the time of your initial inquiry, we were still in the process of analyzing the appropriation,” Ebelt said.

Federal health officials must approve any amendments to the state’s Medicaid program before payments can begin. At least 25 other states reimburse doulas through Medicaid.

Doulas are trained, nonmedical workers who support people through pregnancy and after they give birth. The care they provide is linked to reductions in health complications, which has prompted more states to cover doula services in recent years.

Montana lawmakers who supported expanding Medicaid to cover doula care in 2025 cited scarce maternity services, especially in rural and Indigenous communities. But this year, the state has a Medicaid budget deficit of more than $177 million and is expecting a similar shortfall next year. Plus, federal policy changes slated to take effect later this year are expected to increase costs.

“ There’s a need and a desire for doula services, but a lot of people can’t afford it,” said Sheri Walker, a Helena-based doula and president of the Montana Doula Collaborative. “So that means many of us have other jobs that we have to juggle.”

Walker is a part-time labor and delivery nurse outside of her doula work.

On March 25, health department spokesperson Holly Matkin said in an email to KFF Health News that the agency “will not be moving forward with the implementation of doula services in the Montana Medicaid benefit package at this time.” She had added that it was unclear whether state law gives the department the authority to authorize coverage during the budget shortfall.

State Sen. Cora Neumann, a Democrat who sponsored last year’s bipartisan doula reimbursement bill, said she didn’t know about the department’s plans until she saw KFF Health News’ reporting. Neumann said she and groups that had backed the legislation began calling health officials, making the case for doula services as a low-cost way to provide critical care.

After about a week, Neumann said, state officials told her the agency was moving ahead with doula services after all.

“They were on the chopping block,” Neumann said. “This is a story of how important it is for all Montanans to pay attention and stay connected to what’s happening.”

Ebelt did not clarify what led the department to change its position. However, he warned that optional Medicaid services, such as doula services, may still be cut.

“All optional services, including this service, are being reviewed,” Ebelt said, referring to doula care. He did not respond to a follow-up query as to whether the department might still decide to postpone the program following federal approval.

Optional services are types of care that states choose to cover through their Medicaid programs but aren’t required by federal law. That can include covering eyeglasses, prescription drugs, and prosthetics, and more specialized care such as physical therapy, or inpatient psychiatric services for people under 21.

Those services may not sound optional, said Liz Williams, who studies Medicaid financing at KFF, a health information nonprofit that includes KFF Health News. But she said they’re one of the few avenues states have to make adjustments when budgets get tight.

Congressional Republicans’ One Big Beautiful Bill Act, the spending measure President Donald Trump signed into law last July, is expected to put more states in a budget crunch as its provisions start to take effect by the end of the year. The federal government has estimated that the law will reduce federal Medicaid spending by nearly $1 trillion over 10 years. The law also left states with a higher share of the costs to provide food assistance.

Williams said many states expanded services in recent years by boosting optional Medicaid benefits and provider pay.

“We could see them walk those back,” Williams said.

Montana’s financial problems preceded federal changes. Last year, state lawmakers cut some of the health department’s funding and underestimated Medicaid use. The state also overestimated what the federal government would pay toward Montana’s Medicaid costs.

Health officials must outline a plan to cut costs before the state’s 2027 budget year begins on July 1. Simultaneously, the agency is trying to hire more staffers to begin vetting whether Medicaid enrollees meet or are exempt from new work requirements that also go in place July 1. The new rules, mandated through long-delayed state legislation and the federal spending law, will have a three-month grace period.

Stephanie Morton, executive director of Healthy Mothers, Healthy Babies-The Montana Coalition, said she’s grateful the state is back on track to pay for doula services through Medicaid. But she said she’s worried about potential health care cuts to come.

“We know that doulas are a critical piece of that infrastructure, but standing alone and losing other sources of care really isn’t optimal,” Morton said. “These are not robust systems as it stands.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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They’re in Remission, but Their Medical Bills Aren’t: Cancer Survivors Navigate Soaring Costs https://kffhealthnews.org/health-care-costs/cancer-survival-costs-testing-treatment-premiums-deductibles-trump/ Wed, 22 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2229400 Nearly four years after doctors declared Marielle Santos McLeod free of colon cancer, she has yet to feel liberated from the burden of medical expenses.

McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors surveyed in 2024, about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Marielle Santos McLeod poses, smiling, during chemo treatment. She holds up fingers on her left and right hands, totaling eight.
McLeod feels burdened by the cost of colon cancer treatment, even though she’s in remission. She’s still paying off chemotherapy bills that followed her 2017 diagnosis, on top of out-of-pocket costs for follow-up monitoring and care. (Gordon McLeod)

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude essential benefits that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

A woman stands inside at an office. She is smiling.
Veronika Panagiotou was 25 years old and uninsured in 2013 when she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she says, “and sent me all the bills.” Now she’s cancer-free and insured through work. But treatment-related expenses still weigh heavily on her life decisions, she says. (Kara Kenan)

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s focus on lowering drug prices as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, according to KFF.

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to research published in 2020.

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, estimates show.

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact KFF Health News and share your story.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Real Estate Investors Profit From Long-Term Care While Residents Languish https://kffhealthnews.org/health-industry/real-estate-investment-trusts-senior-housing-nursing-homes-profit/ Tue, 21 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2228343 By the time she was hospitalized in 2020, Pearlene Darby, a retired teacher, had suffered open sores on both legs, both hips, and both heels, as well as a five-inch-long gash on her tailbone. She died two weeks later at age 81 from infections and bedsores, according to her death certificate. Her daughter sued the nursing home, alleging it had left Darby sitting in her own feces and urine time and again.

The lawsuit, settled on confidential terms last year, blamed not only the managers of City Creek Post-Acute and Assisted Living but also the building’s owner, a real estate investment trust, or REIT.

In the year Darby died, City Creek paid CareTrust REIT more than $1 million in rent, while the Sacramento, California, nursing home ran a deficit, court records show.

Federal tax rules ban REITs from running health care facilities, but CareTrust was not an absentee landlord either, according to internal records filed in the case. It chose the nursing home’s management company and required through the lease that the home keep at least 80% of beds occupied. CareTrust granularly tracked how well the home kept to its financial plan, down to the money spent monthly on nurses and food, the records said. And the documents showed that the real estate company kept tabs on government safety inspection findings and Medicare quality ratings.

A man in a maroon t-shirt and a woman wearing glasses flex their arms together for a portrait
Pearlene Darby, a resident of a Sacramento, California, nursing home, was hospitalized with bedsores and an infection. A surgeon said she was too fragile to survive surgery, her daughter’s lawsuit alleged. The home denied liability and the case was settled out of court. She is pictured here with her grandson Caleb Darby. (Shirlene Darby)

Both CareTrust and the nursing home operator denied liability for Darby’s death. CareTrust officials said in court papers that it is not involved in day-to-day nursing home decisions or patient care, and that it monitors facilities to ensure nothing jeopardizes rent payments. In a written statement, CareTrust Corporate Counsel Joseph Layne told KFF Health News: “We are the property owners, not the operators.”

Landlords With Influence

Over the past decade, real estate investment trusts have bought thousands of buildings that house nursing homes, hospitals, assisted living facilities, and medical offices. A KFF Health News examination of court filings and corporate records shows that these landlords have more influence than the health care facilities publicly acknowledge.

The documents reveal REITs often select the management who oversee the operations and leave them in place even when they are aware of threadbare staffing, floundering governance, repeated safety violations, or other problems that hamper quality of care. A California jury in March awarded $92 million in punitive damages against a former REIT over the death of a 100-year-old resident with dementia who froze to death outside her assisted living facility.

“The REITs are in charge,” said Laraclay Parker, one of the lawyers who represent Darby’s daughter.

Absence of Oversight

Despite their ubiquity, REITs remain invisible to state and federal health regulators. Hospitals and nursing homes are not required to disclose rent payments or landlord identities in the annual reports they submit to Medicare.

Under President Donald Trump, the Centers for Medicare & Medicaid Services indefinitely suspended a Biden-era requirement that nursing homes disclose REIT involvement. Catherine Howden, a CMS spokesperson, said in a statement that the agency does not regulate facilities based on their tax status or corporate form and instead focuses on the quality of the care they provide.

REITs now own a fifth of the nation’s senior housing, which includes assisted living, memory care, and independent living, according to an industry analysis. REITs also hold investments in 1 in 6 nursing homes. Publicly traded REITs that focus on health care are now worth nearly a quarter of a trillion dollars, according to Nareit, an industry association.

While one research study found REIT investments were associated with higher spending on nursing wages, another concluded that after being bought by REITs, nursing homes frequently replaced registered nurses with less skilled nurses and aides. A third analysis concluded that health inspection results were worse after REIT investment.

Researchers also found that investor-owned hospital chains that sold buildings to REITs were more likely to close or go bankrupt, as happened in 2024 with Steward Health Care. Often, private equity investors kept the sale proceeds as profits while the hospitals were burdened with new rent costs. “There were no improvements in clinical outcomes,” said Thomas Tsai, an associate professor at the Harvard T.H. Chan School of Public Health.

REITs are required to distribute most of their income and don’t have to pay the 21% federal corporate income tax on it. There is a catch: A REIT that “directly or indirectly operates or manages” a health care facility loses the tax break for five years. Typically, a REIT leases the property to another company that runs the nursing home or assisted living facility and maintains its tax break. Nareit said health care REITs distributed more than $7 billion in dividends in 2024.

Michael Stroyeck, head of health care analysis at Green Street, a real estate research company, said “there’s definitely a symbiotic relationship” between REITs and facility managers because they have the same goals. He said he has seen REITs replace operators that are having difficulties or go bankrupt.

John Kane, a senior vice president at the American Health Care Association and the National Center for Assisted Living, an industry group that represents nursing homes, said in a statement: “Given government funding often falls short, REITs have been valuable partners in helping to invest in long term care without influencing daily operations.”

A man holds a paper photograph of a woman in his hands for a photo
Leslie Adams holds a photo of his mother, Shirley, who died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to a lawsuit he filed. A court awarded the family $17 million. (Taylor Glascock for KFF Health News)

Low Staffing at a Chain

Strawberry Fields REIT, which like CareTrust trades on the New York Stock Exchange, owns or controls the buildings of 131 nursing home facilities. The nursing home operations inside 66 of those facilities are owned by Moishe Gubin, Strawberry Fields’ chief executive, and Michael Blisko, one of its directors, according to Strawberry Fields’ annual report for last year.

Gubin and Blisko also jointly own Infinity Healthcare Management, which manages their nursing homes; Blisko is Infinity’s CEO. On average, Infinity-affiliated nursing homes provided an hour and a quarter less nursing care per resident per day than the national average of four hours, a KFF Health News analysis of federal records found.

Infinity and several of its nursing homes have recently settled 30 death and injury lawsuits in Cook County, Illinois, totaling more than $4 million, said Margaret Battersby Black, a Chicago lawyer. A jury last year awarded $12 million in a lawsuit brought against Infinity and one of its Chicago nursing homes over the 2023 death of Shirley Adams. A retired candy factory worker, Adams died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to the lawsuit.

“She had wounds that no one could explain,” one of her adult children, Leslie Adams, testified at trial. Medicare gives Lakeview its lowest quality rating, one star out of five.

A photograph of the profile of a man, facing sunlight through a window, as he stands in a room with green painted walls
Leslie Adams poses for a portrait at his Chicago home in the room where his mother, Shirley Adams, lived before she was moved to Lakeview Rehabilitation and Nursing Center. (Taylor Glascock for KFF Health News)

Paul Connery, a lawyer for Adams’ family, said they are still trying to collect on the judgment against the nursing home and management company, which now totals $17 million with interest and attorney fees.

“If I get caught speeding and I went to court, they issue me a ticket and I’ve got a fine to pay,” Adams said in an interview. “How are they able to still continue to move on with business like nothing has happened?”

In a phone interview and an email, Gubin said Strawberry Fields, Infinity, and the nursing homes are all legally distinct and that he has not played an active role in Infinity in more than a decade. He said nursing homes get sued all the time but that the verdict against Lakeview is so large that it will force the home to declare bankruptcy or shut down.

“The whole thing is unfortunate,” Gubin said by phone. “For 15 years they were a perfectly good guardian” and “a well-run building,” he said. “You wouldn’t think it was fair to be judged on your worst day.”

Blisko and an Infinity lawyer did not respond to requests for comment.

Strawberry Fields, which owns 10 assisted living facilities and two long-term care hospitals in addition to the nursing homes, earned net income last year of $33 million from $155 million in rent, a 21% profit margin, securities filings show. Gubin said those weren’t excessive returns.

The exterior of a brick building with a sign that says "Lakeview Rehabilitation & Nursing Center"
The owners and operators of Lakeview Rehabilitation and Nursing Center in Chicago also are directors of the real estate investment trust that owns the building, a securities filing shows. (Taylor Glascock for KFF Health News)

A $110 Million Verdict

Traditionally, REIT leases make the operating companies responsible for paying property taxes, insurance premiums, and maintenance costs. In 2008, Congress gave health care REITs a new option to make money: On top of collecting rents, they could set up subsidiaries and take profits directly from health care businesses. They still must have independent management overseeing care decisions. Many REITs have embraced the role even though the subsidiaries must pay corporate taxes and risk losing money if the businesses do poorly.

Colony Capital was a REIT that through layers of shell corporations owned both the building and the operation of Greenhaven Estates, a Sacramento assisted living and memory care facility. In 2018 Greenhaven paid Colony $1.4 million in rent, nearly a third of its $4.5 million in revenue that year, according to financial records filed in court.

Greenhaven also was on the verge of losing its license, according to a revocation notice filed in November 2018 by the California Department of Social Services. Greenhaven had racked up years of health violations, including from letting untrained workers administer medications, lacking enough employees to care for people with dementia, and neglecting a resident who smeared feces over his body, bed, floor, and bathroom, the notice said.

In February 2019, a few weeks after celebrating her 100th birthday, Mildred Hernandez, a resident with Alzheimer’s, wandered out of Greenhaven in the middle of the night. Her assisted living wing had no exit door alarms even though it housed several residents with dementia, court records showed. Berta Lepe, one of Greenhaven’s caregivers, found Hernandez under a bush, wearing only a shirt and underwear. The temperature was in the 30s.

A woman with white hair and glasses, wearing a blue sweater and a floral shirt, smiles for a portrait
Mildred Hernandez died of hypothermia after wandering out of her assisted living facility in the middle of the night. A jury awarded $92 million in punitive damages against the owner of the home. (Ric Tapia)

“She was talking, but I couldn’t understand what she was saying,” Lepe testified at trial over a lawsuit from Hernandez’s family. Hernandez died of hypothermia a few hours later, according to her death certificate.

Frontier Management, the company that Colony had hired to manage Greenhaven, denied liability and settled the lawsuit on undisclosed terms.

Since the lawsuit, Colony has changed its name to DigitalBridge, which no longer owns Greenhaven and gave up its REIT status. At trial earlier this year, DigitalBridge said resident care was the responsibility of Frontier and that Colony “encouraged” Frontier to address problems. Richard Welch, a former Colony executive, testified that replacing management is disruptive. “I viewed it as a last resort,” he said.

In March, a jury awarded Hernandez’s family $110 million: $10 million in compensatory damages, $92 million in punitive damages against DigitalBridge, and $8 million in punitive damages against Formation Capital, an asset management company.

“REIT money is very detached from knowing about or caring about patient or resident outcomes, because it’s not in their business model,” Ed Dudensing, a lawyer for the family, said in an interview. “Their allegiance is to their investors.”

DigitalBridge has asked the judge to delay finalizing the judgment while its legal challenges to the lawsuit and the verdict are evaluated. A DigitalBridge attorney and a corporate spokesperson did not respond to requests for comment, a Formation attorney declined comment, and a Frontier attorney and a spokesperson did not respond to a request for comment.

‘Wet From Head to Toe’

When CareTrust bought City Creek Post-Acute and Assisted Living in 2019, the Sacramento nursing home where Pearlene Darby lived had a one-star Medicare rating and was losing money. CareTrust leased the building to a management company called Kalesta Healthcare Group based on the business plan Kalesta submitted.

While CareTrust was not the operator, it held periodic phone calls with Kalesta, which provided “a full update of what’s happening at the facility,” including changes in leadership, financial progress, and health inspection survey results, according to deposition testimony by Ryan Williams, a Kalesta co-founder.

According to a state inspection report, in 2020, the year Darby died, City Creek left a resident in soiled linens “wet from head to toe lying in bed” for more than eight hours. During a different visit, a health inspector cited the home after watching a nurse put a dirty diaper back onto a resident after caring for a wound. “It was just a small stool and it is far from where the wound is,” the nurse told the inspector, according to the report.

James Callister, CareTrust’s chief investment officer, said in his deposition that CareTrust officials “review results of regulatory surveys provided to us by the tenant. We review the five-star rating.” He said, “We evaluate results of care, but we do not evaluate types of care given or how or when, no.”

Darby had been living in City Creek since 2011 after a stroke left her in a wheelchair. She needed help getting in and out of bed. From September through November 2020, Darby lost 30 pounds, her family’s lawsuit alleged. During those months, employees dropped her three times as one worker rather than the required two operated the mechanical lift, the lawsuit said.

The suit alleged City Creek failed to reposition her every two hours in bed or her wheelchair, which is the clinical standard for people at risk of bedsores, and to promptly order devices to protect her skin.

In November, the nursing home sent Darby to the hospital. A blood test found bacteria had entered her bloodstream from her feces’ touching open skin wounds, according to the lawsuit. The hospital diagnosed her with sepsis. A surgeon said she needed an operation to redirect fecal waste from her intestines but concluded she wasn’t medically stable enough for surgery, the suit said.

Darby began receiving comfort care measures and was sent back to City Creek. She died two weeks later. In court filings, CareTrust and Kalesta denied the allegations.

In a phone interview, Williams, the Kalesta co-founder, said Darby’s death occurred during the most challenging point of the covid pandemic, when California rules required any nurses testing positive for the virus to be sent home and nurses were quitting out of fear for their health. “It was the most herculean of professional efforts to secure enough staff,” he said.

While expressing sympathy for Darby and her family, he said it was “unconscionable” that personal injury lawyers sued nursing homes over care failures during “the worst of times.”

In court, CareTrust petitioned Judge Richard Miadich to dismiss it from the lawsuit before trial. “This case does not concern a property condition,” CareTrust’s lawyers wrote. “CareTrust is simply a landlord.” But the judge ruled last year a jury should decide whether CareTrust “exercised actual control over City Creek.”

The case was settled out of court a few months later. All parties declined to reveal the settlement terms.

A 67% Profit

As recently as November 2023 — four years after its acquisition — City Creek earned one star from Medicare. It was cited for failing to have the minimum nursing home staffing required by California law during five of 24 randomly selected days in 2022, according to an inspection report. Williams said in the interview that Kalesta had increased spending on nursing over the course of its ownership, including boosting wages, but that it takes a year or two to turn around a troubled nursing home. He said the home’s star rating in 2023 was dragged down by its poor inspection history from before Kalesta took over.

City Creek’s rating has climbed in the past two years, and it now has the top overall rating of five, according to Medicare. Medicare rates City Creek’s current staffing levels as average. That’s better than most nursing homes in more than 200 buildings CareTrust bought before 2025, according to a KFF Health News analysis of federal data. On average, CareTrust nursing homes provided a half hour less nursing care per resident per day than the national average of four hours.

In its statement to KFF Health News, CareTrust’s counsel Layne said the REIT worked to “identify quality operators as tenants,” and that the homes the REIT rents out have more nurses and aides than the minimum required for nursing homes by their state governments. “The operators are licensed by state regulators and retain sole responsibility for operations,” the statement said.

CareTrust, which now owns more than 500 senior housing and nursing home buildings, reported net income last year of $320 million from $476 million in rents and other revenue — a 67% profit margin. By comparison, HCA Healthcare, one of the nation’s largest for-profit hospital and health care chains, reported a 10% profit margin for last year.

Lesley Ann Clement, one of Darby’s lawyers, said cases like hers show the nursing home industry is wrong to complain it lacks financial resources for more staffing.

“There’s plenty of money,” Clement said. “They’re just not spending it on patient care.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/real-estate-investment-trusts-senior-housing-nursing-homes-profit/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Democrats Demand Trump Administration Halt Plan To Collect Federal Workers’ Health Data https://kffhealthnews.org/health-industry/opm-federal-workers-health-records-hipaa-democratic-letters/ Tue, 21 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2228955 Democratic lawmakers are demanding that the Trump administration halt plans to collect sensitive medical records for millions of federal workers and retirees, as well as their family members.

The Office of Personnel Management has asked 65 insurance companies to provide monthly reports with detailed medical and pharmaceutical claims data of more than 8 million people enrolled in federal health plans, KFF Health News reported earlier this month. The request, which could dramatically expand the personally identifiable medical information OPM can access, alarmed health ethicists, insurance company executives, and privacy advocates.

Now, OPM Director Scott Kupor has two letters on his desk — one from 16 U.S. senators and another led by Rep. Robert Garcia, the top Democrat on the House Oversight Committee — asking him to drop the agency’s proposal.

“The collection of broad, personally identifiable data regarding medical care and treatment raises concerns that OPM could target certain federal employees seeking vital health care services that the Administration disagrees with on political grounds,” the Democratic House members wrote to Kupor April 17, citing KFF Health News.

The letters from congressional Democrats alone are unlikely to reverse OPM’s plans. Republicans — who control Congress and, ultimately, any oversight activities — have not weighed in on OPM’s notice.

OPM did not immediately respond to a request for comment on the letters. The agency, which said in its notice that it will use the data for oversight and to manage the federal health plans, has not publicly addressed written concerns about its proposal.

The notice, posted and sent to insurers in December, states that insurers are legally permitted to disclose “protected health information” to OPM and does not provide instructions to redact identifying information, such as names or diagnoses, from the claims.

That data could be used to implement cost-saving measures, health policy experts told KFF Health News earlier this month. But it would also give the Trump administration — which has laid off or fired tens of thousands of federal workers — access to a vast trove of personal information.

In the letters, Democratic lawmakers lay out a number of concerns about potential consequences of OPM’s obtaining detailed medical claims for millions of federal workers.

The letter from Senate Democrats — led by Adam Schiff of California and Mark Warner of Virginia — argues that OPM is not equipped to safeguard such sensitive data and that the administration could share the records across government agencies, as it has done with personal information on millions of Medicaid enrollees.

They also assert that the agency does not have a legal right to the data and that insurers’ sharing the information with OPM would “violate the core principles of the Health Insurance Portability and Accountability Act.” HIPAA requires certain organizations that maintain identifiable health information — such as hospitals and insurers — to protect it from being disclosed without patient consent. The proposal, the senators warn, threatens patients’ relationships with their clinicians, especially “sensitive disclosures regarding mental health, chronic illness, or other deeply personal conditions.”

“For these reasons, we strongly urge you to cease any further consideration of this proposal,” states the letter, which was sent to Kupor on April 19.

The American Federation of Government Employees, the largest union for federal employees, responded with alarm to KFF Health News’ reporting. The union noted in a statement from its national president, Everett Kelley, that OPM’s proposal “comes in the context of coordinated attacks on federal employees and repeated stretching of the legal boundaries for sharing sensitive personal data across government agencies.

“The question of what this administration intends to do with eight million Americans’ most private health information is not academic,” the AFGE statement read. “It is urgent.”

In an emailed statement, Kelley applauded the congressional letters.

“We are pleased that Democratic lawmakers on the Hill are just as outraged as we are over this administration’s blatant attempt to breach the privacy of millions of Americans across the country,” Kelley wrote. “We share their concerns regarding potential misuse of the information to continue illegally targeting workers and their demand for OPM to withdraw this proposal.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/opm-federal-workers-health-records-hipaa-democratic-letters/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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The Accidental Architect of America’s Drug Patent Problem https://kffhealthnews.org/podcast/an-arm-and-a-leg-alfred-engelberg-accidental-architect-drug-patent-thicket/ Mon, 20 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?post_type=podcast&p=2228494 Depending on whom you ask, Alfred Engelberg could be a hero or a villain in the story of American pharmaceuticals. The patent lawyer helped write legislation that led to a dramatic increase in the number of generic drugs on the market. He also contributed to a patent system that gives pharmaceutical companies monopolies on their most lucrative drugs, blocking generic competition and keeping prices high along the way. 

An Arm and a Leg host Dan Weissmann traces Engelberg’s story back more than 50 years, from a scrappy childhood on the Atlantic City boardwalk to watching President Ronald Reagan sign his bill into law at the White House Rose Garden. Today, Engelberg advocates for policy changes he believes will enable more generic drugs to reach the market faster. 

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on "All Things Considered," Marketplace, the BBC, 99% Invisible, and "Reveal," from the Center for Investigative Reporting.

Credits

Emily Pisacreta Producer
Claire Davenport Producer
Adam Raymonda Audio wizard
Ellen Weiss Editor
Click to open the Transcript Transcript: Why drugs cost so much, 101: Medicine monopolies

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there–

We are kicking off a new series here — We’re calling it An Arm and a Leg 101.

We’ve spent years of reporting on two huge questions: Why does health care cost so freaking much? And what can we maybe do about it?

We’ve been chasing answers one story, one question at a time.

Now, we’re pulling together some of what we’ve learned. Digging a little deeper, going a little broader.

Starting with why so many drugs cost so much.

One of the first questions I ever asked — one of our first stories — was: How can insulin be so expensive? Wasn’t it discovered in the early 20th century? Shouldn’t it be a generic drug by now?

You know, cheap? 

And part of the answer I got was: Insulin has been transformed since the early 20th century. A lot.

A medical researcher named Jing Luo told me: Today’s insulins are a long way from what we had a hundred years ago.

Jing Luo: They’ve been really modified at a molecular level. It’s cool stuff. It’s super cool stuff. And you know, there are multiple Nobel prizes in physiology and medicine that have made this happen.

Dan: And all that super-cool stuff, those amazing discoveries, got patented.

Meaning: The patent-holders– the pharma companies — got a monopoly on those amazing discoveries.

The pharma companies claimed patents — and monopolies– on a bunch of other things too. Not all of them amazing.

But each new patent can mean another delay for a generic version coming to market.

Jing Luo: Companies can stack dozens of patents on top of each other to try to thwart generic competition because they can say, look, we’ve got three patents on the active ingredient. We’ve got patents on the medical uses of the active ingredient. We’ve got patents on the non-active excipient associated with this ingredient. We’ve got multiple patents on the devices, and so you who are trying to enter this space will sue you for patent infringement on all of them.

Dan: A patent guarantees you at least a 20-year monopoly. Drugs can generally get an extra five. 

And these extra patents — secondary patents –can keep you protected LONGER. If you don’t file them at the same time as the original: 

To talk about a drug that’s in the news right now. The original patent on the active ingredient in Wegovy and Ozempic actually expired this year.. The extra five years extends it to the early 2030s. 

But dozens of extra patents — secondary patents, filed later — mean that here in the U.S., we might not see cheaper generic versions until 2042. Or later.

And as Jing Luo told me: This strategy isn’t a secret. It’s an industry cornerstone. 

Jing Luo: When you listen to these like CEOs of pharma companies being interviewed at CNBC, you know, they’d be like, well, what about generic competition for this product? And they’ll just keep saying, no, no, no. We’ve got this really robust patent portfolio. We can withstand any challenge. We’re gonna tie this up in courts forever and don’t worry about it.We’re gonna continue this gravy boat for a long, long time. That’s the way they reinsure investors.

Dan: A robust patent portfolio. ?Or what researchers and advocates call a patent thicket.

They say quality matters less than quantity. 

The numbers are wild. 

According to one study, the 10 best-selling drugs for 2021 — drugs for cancer, HIV, arthritis — were protected by a combined total of seven hundred and forty-two patents. With hundreds more “pending.”

When these add-on patents get challenged in court, they actually get tossed out more often than primary patents..

But lawsuits cost money. A robust patent portfolio — a patent thicket — means generic companies would need to be ready to file a LOT of them.

So, we wanted to know: How did all this happen? How did these games get started?

It turns out, there is one guy who can tell you the story from the beginning, for better and for worse. Who helped shape it. Made millions of dollars from it. Saw its flaws. And has spent most of the last 30 years trying to fix them. Hie’s a lawyer named Al Engelberg, and he’s 86 years old.

Alfred Engelberg: I tell people all the time, I live in a world, a pharma world where half the people think I’m dead and the other half wish I was.  

Dan: Al Engelberg’s story is the story  of generic drugs in America. And it’s a wild ride. 

This is An Arm and a Leg — a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful.

?Al Engelberg’s parents fled Nazi Germany in the late 1930s.

He was born here, less than a year after they arrived. They had nothing.

And  here’s where they made their new life. 

Retro news reel: We are flying over a well-known eastern city. That is remarkable because manufacturing is almost non-existent. A city whose principle business is the entertainment of millions. Atlantic city, often called the vacation capital of the nation

Dan: Al likes to say he learned most of what he knows about practicing law on the Atlantic City boardwalk, by the time he was 16. 

Alfred Engelberg: We grew up very, very fast there. I started working when I was about nine or 10 and, and there were lots of opportunities on the boardwalk. 

Dan: His first “job” was crawling around under the boardwalk, looking for loose change.

Alfred Engelberg: But I went on to work at hotdog stands and at an illegal bingo game for the local mob.

Dan: And in every job, Atlantic City drove home its major lesson: Cheating — hustling — is something you’ve gotta expect. 

At this illegal bingo parlor, Al’s job was walking between tables, doling out bingo cards for a dime apiece. The bosses hired college kids to walk behind kids like Al, to keep him honest.

Alfred Engelberg: I mean, these guys are running an illegal game, but they still need to count, and they still inherently don’t trust anybody. 

Dan: Which was correct. Al says the college kids had their own hustle: They’d have him set aside a dollar or two before turning in his dimes — split that dollar with him fifty-fifty — and tell the bosses Al’s count was fine.

Alfred Engelberg: And everybody knowing that the counts were wildly inaccurate anyway ‘cause the little old ladies were, were stealing cards. Everybody in the room had their own thing going, you know, from the customers on.

Dan: After Al made it out of Atlantic City, his unique on-the-job education continued. He studied chemical engineering at Drexel, then took a job as a patent examiner while going to law school at night.

And at that job, he learned: The patent system was ripe for hustling.

Partly because most of his colleagues weren’t necessarily giving the job their all. 

Like him, most patent examiners were working their way through law school. And they were sneaking time to study on the job.

Alfred Engelberg: We used to be able to cut our notes down so they fit in these file drawers with the patents. And we would be reading your notes and if your boss came by, you would just drop a patent on top of the notes.

Dan: You could say it was Atlantic City all over again. Everybody in the job is sneaking something for themselves — in this case, time.

And Al Engelberg could see that, even if his colleagues gave it their all, they were too green to do their job well. 

A patent examiner’s job — deciding whether a proposed invention deserves a monopoly (which at that time was 17 years) — means deciding whether the idea for that invention would be obvious to “a person of ordinary skill in that field.”

Alfred Engelberg: And most of the examiners had never worked in that field and had absolutely no idea. And this is the big leagues. You’re granting somebody a monopoly for 17 years, and it seemed ridiculous on its face.

Dan: Al cut his own path at the patent office. He’d worked his way through engineering school, in manufacturing plants, he saw what people of ordinary skill in that field solve problems every day. So he specialized in examining patents he actually knew something about.

That got him promoted, then it got him recruited by a corporate lawyer.. After the company paid his way through the rest of law school, he jumped to the Justice Department. 

He was ambitious– he wanted experience junior lawyers don’t usually get — like trying cases of his own.

After a few years doing just that, he took a job with a small law firm in New York City in 1968.

Alfred Engelberg: I came to New York to private practice at the age of 30 and I was ready to go. I mean, I was ready to, to tear the world apart and I did.

Dan: Patents were still a specialty. Then, in 1973, he gets a call that leads to his first generic drug case.

Generic drugs were not a hot market at the time.

Alfred Engelberg: ?The generic drug industry in 1970s was essentially, a half a dozen, privately owned family businesses, mostly in the metropolitan New York area. And most of the drugs that they were selling were drugs that were approved before 1962. 

Dan: Yeah. 1962 is when the FDA made it harder to get a new drug approved — you had to go through long clinical trials to show that your drug was safe and effective. 

Even if your drug was a generic version of an existing drug. Those little companies didn’t have the capital to run those trials, so they were stuck selling those old drugs.

Not much of a business. Maybe 20 percent of prescriptions were for generic drugs.

So when Al Engelberg got a call for his first generic drug case, that was the context. And the case itself did not sound promising. For one thing:

Alfred Engelberg: The call wasn’t even from the client. It was from a bank. The client was bankrupt. 

Dan: The client was bankrupt. This bankrupt client, Premo Pharmaceuticals, was getting sued for patent infringement. The bank was willing to put up ten thousand dollars for a defense. Nowhere near enough to actually try a case. Oh, and…

Alfred Engelberg: From what they told me, the information they gave me, we didn’t have a very good defense.

Dan: But Al Engelberg saw an opening. He could see that his opponents have weaknesses too.

Alfred Engelberg: The patent owners were in a very strange position. If they won, they got nothing because we were already bankrupt. Two, they were gonna have to spend the legal fees to win.

Dan: Win against a young lawyer named Al Engelberg who already had a rep as a tough opponent. So they could lose.

Alfred Engelberg: And if they lost, they would lose millions and millions of dollars in business because there wouldn’t be a patent. And they’d have competition from generic drugs.

Dan: And meanwhile, Al Engelberg is also sizing up the judge. He knows the guy doesn’t love patents.

So Al shows up to the first conference and he bluffs. 

Alfred Engelberg: I said to the judge, oh, your Honor, you know, it’s another one of those patents. They’re all invalid. And I said, we don’t need very much discovery. We’re, we’ll be ready to go to trial in a few months. Just set a trial date.

Dan: The other side walks out beside themselves.

And within a couple of weeks they call Al to say: Hey, how about this? You guys just acknowledge our patent is OK, and we’ll give you the money we would’ve spent litigating. Call it 400,000 bucks?

Alfred Engelberg: I called the client and said, how’s $400,000? He said, are you kidding?

Dan: They didn’t just get out of trouble — they got out of bankruptcy, with $400,000 in their pockets. Because Al Engelberg knew how to size up a situation.   

Alfred Engelberg: You don’t learn that in law school. That’s not what they teach.

Dan: Word gets  around about that case, and pretty soon everybody in the generic drug world is calling him.

It’s a small world, but by the end of the 1970s, there may be room for it to start getting bigger. 

People are starting to notice: Drugs are expensive. Maybe there should be more cheap generics. 

Some generic drug companies form an association and start lobbying: Make it easier to get generic drugs to market without having to go through all those trials.

The brand-name drugmakers push back: They say it takes so long to run the trials and get their drugs approved, they don’t get enough time to make money before those patents expire.

In 1983, Democratic Representative Henry Waxman steps in to broker a compromise, with Republican Senator Orrin Hatch.

And Mr. Engelberg goes to Washington. To run strategy for the generic drugmakers. 

Alfred Engelberg: In a lot of ways , that’s where my Atlantic City training really helped me at the end of the day

Dan: There were a lot of people, with a lot of interests. A lot of angles. ?He starts commuting from New York to Washington DC a couple times a week — for months and months, more than a year.

And Al Engelberg says: This time, it wasn’t just about winning a case.

Alfred Engelberg: I was in the back of a cab the way I remember, with the senior partner of the law firm. And he says to me, why are you breaking your ass going to Washington two or three times? Why don’t you send an associate? You know, it’s just like, it’s just another case. And I said. I said, are you kidding? I said, you know, how many lawyers ever get to do what I’m doing right now? To be at the table influencing what may be a major law that’s gonna have major consequences is, is like something I never thought my whole life I’d be doing.

Dan: A kid from Atlantic City was exactly the right person to try to balance all the angles, negotiate a compromise. It took more than a year. It almost didn’t happen. But then it did. Congress passed the bill, and President Ronald Reagan got in front of cameras to sign it.

Ronald Reagan: Let me turn my attention to the real reason we’re here this afternoon, signing into law the Drug Price Competition and Patent Term Restoration Act of 1984. 

Dan: better known as Hatch-Waxman.

Hatch Waxman had three basic components:

One: Brand drugmakers got a few extra years on their patents.

Two: Generic drugmakers got a pathway to get FDA approval.

And three –The new law laid out rules for a generic drugmaker when they wanted to CHALLENGE an existing patent. 

Negotiating that third part was the part where Al Engelberg’s education on the Atlantic City boardwalk, and the U.S. patent office, and the generic drug industry came together: The result would make him millions and millions of dollars — and blow a giant hole into the grand bargain he had worked so hard to bring about.

That’s coming right up.

This episode of An arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. The folks at KFF Health News are amazing journalists — their work wins all kinds of awards, every year. We are honored to work with them.

So. The brand-name drug makers and the generic drug makers struck a deal. That deal was good for them. Both sides got something big out of it. The public was supposed to get something out of it too.

And, to be fair, we did: Remember, back then, maybe one out of five prescriptions was for a generic drug. Now it’s nine out of ten.

But we pay more than ever for drugs. Mostly for branded, patent-protected drugs. And the biggest, most-important, most profitable drugs get locked behind patent thickets.

How did that happen? 

Well, to understand that, it helps to know what Al Engelberg got out of the whole bargain.

Al had been there at the bargaining table, on behalf of the generics. 

One day, during those negotiations, he was in the office with Henry Waxman’s lead counsel, a guy named Bill Corr, when Corr got a call from someone on the other side.

Corr starts pointing at the phone, pointing to Al — indicating: This guy is talking about you.

When Corr gets off the phone he says: That guy’s not sure about this deal where bad patents could be challenged. He’s suspicious about where you might take this. Like, are you just gonna set up a bounty-hunting operation, to get patents declared invalid?

And Corr said, Al, would you do that? 

Alfred Engelberg: And I said, you know, Bill, until this moment, I’ve never given it any thought, but it’s a hell of a good idea. Maybe I’ll look at it. 

Dan: And he did. Starting almost as soon as Hatch-Waxman became law.

Alfred Engelberg: And we sat in the rose garden, September 23rd, 1984, watched Reagan sign the bill. And in December of that year, I sat down at my kitchen table with a yellow pad and I laid out a strategy.

Dan: If you were gonna set up a bounty-hunting operation, how would you do it?

Al Engelberg knew a lot of patents were garbage. Knew it from his time in the patent office, knew it from practicing law. And he knew how much money a successful patent challenge could be worth.

The way Hatch-Waxman worked: If a generic drug company challenged a patent and won, they would get six months before any OTHER generic drugmakers could get a crack at the market.

So their only competition would be the brand. If a pill cost two cents to make, and the brand was selling for a dollar a pill — that’s 98 cents of profit for every pill.

You’re the only competitor? You could charge 75 cents a pill and get 73 cents of profit. On a hit drug, you could make millions and millions — just in those six months. 

Al’s idea was this: Partner up with a generic drugmaker. Go find cases– drugs with weak patents. Win ’em. 

And split those millions in potential profits fifty-fifty. 

Al pitched a generic drugmaker — they were ready to go — and brought the deal to his law firm. .

Alfred Engelberg: As it turned out, my partners weren’t interested in having me do this. They tried to talk me out of it.

Dan: But they couldn’t. So he left. Went out on his own. All on his own.

Alfred Engelberg: I never hired a single soul, not even a secretary. And I couldn’t type. I still can’t type.

Dan: But he hunted and pecked his way through brief after brief. He bought an early portable computer — it weighed thirty pounds — and lugged it around in the back of his car. For ten years.

Alfred Engelberg: It was stupid. I almost killed myself. But, it worked out okay.

Dan: Yeah. Turns out Al was really good at finding the problems with drug patents.

In one of his first cases, Al Engelberg personally made more than 70 million dollars. Others settled: A few million here, a few million there– it adds up.

And then…

Alfred Engelberg: It got to be the mid nineties, and I was working on a case called Buspar. 

Dan: The Buspar case ended up a big winner for Al Engelberg and his generic drug partners. 

But it had consequences that went way beyond a single case. And led to big losses for the public.. Here’s how it went.  

Alfred Engelberg: Buspar was an anti-anxiety drug. And by all accounts not a very good one.

Dan: But Bristol Meyers Squibb invested in big advertising and marketing campaigns.

Speaker 5: I feel anxious. I can’t concentrate. 

Speaker 6: I’m so irritable. If you. You suffer from excessive worry. It can feel like a mountain of anxiety. 

Speaker 5: I’ll never get it all done. I’m overwhelmed. 

Speaker 6: But a prescription medication called buspar can help.

Dan: And all that marketing did its job. By the mid-1990s, Buspar was making more than 200 million dollars a year for Bristol.

Alfred Engelberg: The only problem for them was that the drug was not new. 

Dan: The active ingredient was well-known in medical literature as a tranquilizer. Nobody had bothered to market it.

So Bristol Myers Squibb filed a patent on it, claiming it had discovered a new use for this well-known tranquilizer: Treating anxiety.

Al Engelberg says when he read the patent application, he could barely believe it: What do tranquilizers do if not… treat anxiety?

It’s like saying: There’s this stuff called sugar. We’re gonna take out a patent on using it as a sweetener.

This looked like a case for a guy from Atlantic City. 

Alfred Engelberg: I did something that lawyers don’t. That’s just the way I was built. 

I filed a motion with the court and basically said, we don’t need any evidence.

You just have to read the patent. If you believe it’s true, the patent’s invalid. Just, you know, all you need is a dictionary basically.

Dan: Al says Bristol was eager to settle. 

Alfred Engelberg: We get into a settlement discussion and we keep saying, no, no, no, no.

Dan: Al’s partners had done the math: They figured they stood to make a hundred million dollars or more once they won. So when the other side offered 25 million, no was the easy answer.

Alfred Engelberg: We said, why are we gonna take this? You know, it’s crazy. There’s a reward here we know what it is. We’re gonna get it eventually.

Dan: Al sits down with a lawyer from the other side, a guy he knows, explains how he sees the math.

And soon the other side comes through with a much bigger offer: 72 million dollars – almost three times as much. 

Alfred Engelberg: And I’m sitting there like, what are you crazy? But then think about it from their point of view. 

Dan: Paying 72 million dollars is nothing, compared to what Bristol stands to gain if this lawsuit goes away. 

With their monopoly, Bristol Meyer Squibb is making more than 200 million dollars a year on Buspar. And unless somebody else lines up to do what Al Engelberg had done, expect to keep that monopoly for years.

Charging whatever they want. Two dollars a pill, three dollars a pill. Which Al Engelberg says is exactly what happened.

In fact, they kept that monopoly for like five years. 

Alfred Engelberg: As it turned out, nobody came behind us. And so, they had that monopoly until 2000. So they got five years of 2 billion, in gross profits. 

Dan: They made out.

Alfred Engelberg:  For the cost of $75 million. And you know, the public got screwed ’cause they are continuing to pay, you know, $2 a pill or $3 a pill for a drug that eventually ends up being available for 20 or 30 cents. Um, so that’s, that’s how it works.

Dan: That’s how it works. The branded company and the generic company both make out great. Cheaper generic versions of a drug get delayed. 

That amazing payday for Al Engelberg and his partners at the generic drug company turned into a model a template for the kind of deal that every generic drug company would want in on.

It got a nickname: Pay for delay.

Alfred Engelberg: That spread through the industry like wildfire, those numbers, you know, you don’t make those numbers half a cent at a time on, on pills,

Dan: Lawsuits were way more profitable.

But Al Engelberg wasn’t filing them.

A year or so after the Buspar case settled, sparking the Pay for Delay gold rush, he retired. He had plenty of money and nothing to prove.

And in retirement, he started evaluating what he’d accomplished, for better and for worse.

For better, generic drugs had more than doubled their share of the market since Hatch-Waxman took effect.

For worse, he could see two places where — despite all of his Atlantic City training — he had missed a couple of angles in negotiating Hatch-Waxman. 

One was: this whole pay-for-delay scheme. Turned out, in balancing incentives for brands and generic makers, he’d left open this perverse incentive that left the public out. 

And the second was a loophole  that Hatch-Waxman had left open.: 

It created a process where players like Al and his generic partners could challenge patents on drugs like Buspar, that they thought didn’t deserve protected monopolies. It removed some friction for those attacks. 

The drug companies developed a way to add more friction:  stacking extra patents — secondary patents — on every drug.

Developing patent thickets.

Even if a secondary patent is trivial  — and lots of them do get tossed out — challenging it means a court fight. And that costs money.

Alfred Engelberg: It caused the big drug companies to just get more and more patents. Because why not? You know, there was nothing standing in the way.

Dan: I mean, nobody knows better than Al Engelberg: Patent examiners don’t exactly stand in the way. 

And those patent thickets and pay for delay, they feed on each other. 

Alfred Engelberg: The economics of the business, caused these kinds of settlements to reach epic proportions. So the generic companies would, challenge these secondary patents and, the drug companies would pay them off.

Dan: In 1999 he published an article in a scholarly journal arguing that Hatch-Waxman needed a reboot. Even the six-month head start for a successful challenge could probably go. 

And ever since — for more than twenty-five years — he’s poured millions of dollars into efforts to tighten the rules. Funding research. A public-information campaign from Consumer Reports. Even a center for IP law at his alma mater, NYU.

It hasn’t always gone his way. 

Pay for delay has gotten much bigger since Al Engelberg wrote his first article calling for reform: He wrote in 1999 that about two dozen patent challenges had been filed.

Now he estimates that number at twelve thousand.

Alfred Engelberg: I can’t tell you how many tens of billions of dollars in legal fees that is. It’s one of the fastest growing and and steadiest industries for big law.

Dan: A Hatch-Waxman litigation forum on LinkedIn has more than fourteen thousand members.

And Hatch-Waxman doesn’t cover many of today’s the top-selling drugs– the biggest moneymakers. They belong to a class called “biologics.”

That includes famously-expensive rheumatoid arthritis drugs like Humira and Enbrel — and insulin. 

Biologics weren’t a category forty years ago when Hatch-Waxman got negotiated. Congress passed a new law to deal with them in 2010 — ?the Biologics Price Competition and Innovation Act.

Al Engelberg is not a fan of that law.

Alfred Engelberg: Whatever mistakes were made in Hatch Waxman, they were multiplied by 10 and deliberately in the biologics law

Dan: He says the all but encourages patent thickets. And doesn’t provide a pathway to challenge them.

He says it reminds him of some of his early days practicing law.

Alfred Engelberg: Back in the seventies, we used to have small startup clients in the computer field, and they would get letters from IBM. It says, we are ready to inform you that you may be infringing one or more of the following patents. And there was a 10 page list of patents attached. And the startup would come to us and say, you know, what should we do? And we would say, find another line of work, you know, what are you gonna do?

Dan: But he has not given up. In 2025, he published a book: Breaking the Medicine Monopolies.

It tells the story of his career — and lays out his prescriptions for fixing the problem.

He doesn’t JUST focus on plugging the holes in Hatch-Waxman and the biologics law.

Alfred Engelberg: You know, we don’t actually need a generic drug industry. We need generic drug pricing. 

Dan: He’s got proposals for an increased government role in negotiating and regulating prices — and more than that.

He argues that a 1980 law allows the government to commisssion generic versions of drugs that were developed using public research dollars.

He also says the FDA rules that protect secondary patents on drugs — that allow patent thicketing — are based on a completely wrong interpretation of Hatch-Waxman.

And tells us he’s working up a challenge, with help from AI tools like Claude. 

He’s 86 years old. And he doesn’t seem inclined to stop.

Alfred Engelberg: It so changed my life and I did so well by it, I thought, how can I not take on this problem? Who’s gonna do it if I don’t do it?

Dan: He’s got the time. Money’s no object. And he knows the territory as well as anybody. He helped create it. 

Alfred Engelberg: So it’s, it’s my obligation really. It’s that sort of Jewish guilt. What can I tell you? I’m paying back for the bingo game.

Dan: So we’ve gone back more than fifty years on the question: Why aren’t there more generic drugs? We’ve learned why we’ve got the ones we have, and what stands in the way of getting more.

And that is just in time. Because this spring the U.S. Supreme Court will hear arguments in a case that could restrict the generic drug pipeline even further. It could have major implications.

And understanding what they are requires all of the 101 we’ve covered here. We’ll have that story for you in a few weeks. Til then, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from Dan Weissmann— and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

This series — An Arm and a Leg 101 — is made possible in part by support from Arnold Ventures. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

 Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support.


“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on FacebookInstagramLinkedIn, and Bluesky. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/podcast/an-arm-and-a-leg-alfred-engelberg-accidental-architect-drug-patent-thicket/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Health Industry Archives - KFF Health News https://kffhealthnews.org/topics/health-industry/ KFF Health News produces in-depth journalism on health issues and is a core operating program of KFF. Fri, 24 Apr 2026 18:36:08 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.5 https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Health Industry Archives - KFF Health News https://kffhealthnews.org/topics/health-industry/ 32 32 161476233 In Connecticut, Doctors and Dentists Are More Likely Than Hospitals To Sue Patients https://kffhealthnews.org/health-care-costs/the-week-in-brief-connecticut-doctors-dentists-medical-debt/ Fri, 24 Apr 2026 18:30:00 +0000 https://kffhealthnews.org/?p=2230134&preview=true&preview_id=2230134 How often do hospitals, physicians, and other providers sue patients over unpaid bills? 

That’s a question we’ve asked a lot over the last several years at KFF Health News. Since 2022, we’ve been working with newsrooms around the country, such as the Connecticut Mirror, to explore the scale and impact of America’s medical debt crisis. It’s part of a project we call “Diagnosis: Debt.” 

We know that this type of debt burdens many people — about 100 million adults, according to a nationwide survey we did. But in most states, it’s almost impossible to gauge how many patients are getting taken to court over health care debt. 

Connecticut’s court data is different. 

It offered an opportunity to explore just how many people are being sued over medical and dental bills, who is suing patients, and for how much. Over the past year, I’ve collaborated with CT Mirror reporters Katy Golvala and Jenna Carlesso to learn more about the people facing legal actions.

What we found was surprising … and sad. This week, we shared the first of our articles, which explores how hospitals have been supplanted by physician groups and other medical and dental providers as the most aggressive bill collectors.

That’s a major reversal from five years earlier, when hospital system lawsuits made up three-quarters of health-related collection cases in the state’s courts.

The shift is moving medical debt collections into a less regulated realm. Most hospitals, because they are tax-exempt nonprofits, must make financial aid available to low-income patients and follow federal regulations that limit aggressive collection activities. Other medical providers, such as private medical groups, are generally exempt from these rules. 

Lawsuits can lead to garnished wages, liens on homes, and hundreds of dollars of added debt from interest and court fees. They also pile additional financial strains on struggling families, prevent patients from getting needed care, and sap trust in medical providers.

“It’s really messed up,” said Allie Cass-Wilson, a nurse in Bristol, Connecticut, who was sued over a $1,972 debt by an OB-GYN practice where she’d been a patient years earlier. She did not contest the lawsuit, court records show. Still, she asked: “How can they do that to people?”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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A ‘Barbaric’ Problem in American Hospitals Is Only Getting Bigger https://kffhealthnews.org/health-industry/emergency-room-ed-boarding-hospital-beds-long-waits-crisis/ Fri, 24 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2230362 In the last months, weeks, and days of his life, “I will not go to the emergency room” became my husband’s mantra. Andrej had esophageal cancer that had spread throughout his body (but not to his ever-willful brain), and, having trained as a doctor, I had jury-rigged a hospital at home, aided by specialists who got me pills to boost blood pressure; to dampen the effects of liver failure; to stem his cough; to help him swallow, wake up, fall asleep. 

“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” nurse-to-patient ratios in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a moral hazard for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate a program that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Watch: Acknowledging Health Care’s Great Divide https://kffhealthnews.org/health-industry/health-care-policy-political-divide-david-blumenthal-interview/ Thu, 23 Apr 2026 19:00:58 +0000 https://kffhealthnews.org/?p=2230749 In this “How Would You Fix It?” interview, Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast, sat down with David Blumenthal — a physician, health policy expert, former Obama administration official, and author — to explore the dynamics that make fixing the nation’s health care system so difficult.

They discussed the pivotal role the president of the United States plays in health policy — whether it is building support for or opposition to new plans and proposals. “Presidents have a level of authority which is often underappreciated, especially in health care,” Blumenthal said.

Blumenthal and Rovner also discussed the historical reasons the U.S. has been unable to enact universal health care, incrementalism versus sweeping change, and what he described as “the dance” between proponents and opponents — usually a clear party-line split between Democrats and Republicans — of major health care reforms.

Today, the split seems to have come to a head, as public health, science, and expertise are being viewed by one end of the political spectrum as “the opposition,” Blumenthal said, which will complicate efforts. Still, he outlined ideas for moving forward.

An abbreviated version of this interview aired April 23 on Episode 443 of What the Health? From KFF Health News: “RFK Jr. vs. Congress.”

Blumenthal’s latest book, Whiplash: From the Battle for Obamacare to the War on Science, co-written with James A. Morone, offers a behind-the-scenes look at how three presidential administrations pursued very different health policy goals.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Medigap Premiums Leap, and Consumers Have Few Alternatives https://kffhealthnews.org/medicare/medigap-medicare-advantage-premiums-rate-increase-few-alternatives/ Thu, 23 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2228699 After decades of selling insurance, Illinois-based broker John Jaggi had never seen anything like it.

More than 80 of his customers who were enrolled in the same Medicare supplemental plan from the insurer Chubb got hit last August with a 45% increase.

“In my 49 years of doing biz as a broker, I’ve never seen a premium increase be effective immediately on everyone, instead of on their policy anniversary,” said Jaggi, whose brokerage scrambled to find more affordable options for clients. The policies pick up deductibles and other costs not covered in traditional Medicare, and without one there is no upper limit on how much a consumer might owe each year.

While 45% was an unusually big jump, Jaggi and other brokers say double-digit premium increases for Medicare supplemental, or Medigap, policies are becoming the norm.

A Chubb spokesperson did not respond to requests for comment on the increase.

More than 12 million people — about 43% of those in traditional Medicare — buy a Medigap policy. Others rely on some sort of retiree employer coverage or a different backup. About 13% of people in traditional Medicare don’t have supplemental coverage, according to KFF, meaning they could be vulnerable to large costs if they have a serious illness.

In the supplemental market, following big increases last year, rates appear to be rising again. In early 2026 filings with state insurance commissioners from Aetna, Blue Cross Blue Shield, Cigna, Humana, Mutual of Omaha, and UnitedHealthcare, rate increases for Plan G policies — the most commonly purchased supplement type — ranged from just over 12% to more than 26% in the first quarter, according to Nebraska-based consulting firm Telos Actuarial.

“While this is a small dataset across a select number of states, it’s an indication that carriers are looking to correct their premium rates in light of upward pressure on their claims experience,” said Brett Mushett, a consulting actuary with Telos.

Climbing Numbers

Premium rates vary based on the type of coverage chosen, where a beneficiary lives, and their age. For Plan G coverage, beneficiaries paid an average monthly premium of $164 in 2023, according to KFF. That amount has likely risen since.

“In some states, like Ohio, Medicare supplements for years would have a 3% to 5% year-over-year increase. Now it’s 10% to 15%,” said Amanda Brewton, owner of Medicare Answers Now, a marketing organization whose clients are sales agents.

In Alaska, Premera Blue Cross raised the premiums on its Plan G policies by nearly 12% for this year, according to rate sheets provided to KFF Health News by insurance agent Patricia Mack, who said another insurer raised rates by nearly 13%.

For example, a 65-year-old woman who last year would have been charged $172 a month for a Plan G policy would now face a monthly rate of $192, said Mack, who owns Alaska Insurance Benefits in Wasilla.

Premera spokesperson Courtney Wallace said in an email that Medicare makes changes to deductible and copayment rates each year, which affects supplemental plans that cover those increasing amounts.

Wallace also noted that the insurer saw higher medical service use among its members, “which further drove claims costs and ultimately impacted premiums.”

Agents and policy experts blame a range of factors for rising premiums: an increase in the use of medical services by beneficiaries; the aging of the population; increases in labor and medical costs; rules in some states governing Medigap plans; and people’s enrolling in — or getting out of — private Medicare Advantage plans.

“Five years ago, it was exceedingly uncommon to have a carrier with a rate increase of more than 10%. Now it’s very uncommon to see a rate increase below 10%, and it’s not uncommon to see it over 20%,” said Chalen Jackson, vice president for government affairs at Integrity, a Dallas-based company that sells life and health insurance.

Jaggi, who co-owns Jaggi Petry Insurance & Investments in Forsyth, Illinois, along with his daughter, said he eventually found other options for many of those 80-plus clients with the large increase, which came from an insurer that had previously been the lowest-cost option. But it wasn’t easy — and continuing increases are expected.

“These are unbelievable increases,” said Jaggi, who said he is seeing premium hikes exceeding 15% this year across a range of insurers.

Policy experts have outlined possible solutions, including for Congress to cap out-of-pocket costs for Medicare beneficiaries or subsidize the purchase of Medigap coverage.

“Traditional Medicare is the only federal health insurance program without an out-of-pocket cap,” Sen. Ron Wyden (D-Ore.) wrote in an email, adding that the program “needs to be updated and strengthened to protect the Medicare guarantee for American seniors.”

But making changes to Medicare that require congressional approval is unlikely in the current legislative environment, especially because adding an out-of-pocket cap would add costs to the federal budget.

How This Plays Out

People generally qualify for Medicare when they turn 65. Beneficiaries have six months after they initially enroll in the traditional fee-for-service program to purchase a Medigap plan at standard rates without having to answer health-related questions.

Strict rules then kick in around when beneficiaries can enroll in or switch Medigap coverage and options become much more limited, with each one generally involving trade-offs or tough choices.

At least 16 states have what’s known as a “birthday rule,” which requires insurers once a year to allow people enrolled in a Medigap plan to change to different supplemental coverage — usually around their birthdays — without being medically underwritten. Those rules can help consumers, including those with health conditions, to switch.

An additional four states — Connecticut, Massachusetts, Maine, and New York — require insurers to offer at least one Medigap policy to all applicants either year-round or during an annual enrollment period, depending on the state. Changes are allowed no matter the person’s health.

Another option for those facing high Medigap costs is to leave traditional Medicare and enroll in a private-sector Medicare Advantage plan, which have out-of-pocket caps. But joining one means beneficiaries must generally rely on a set of in-network doctors and hospitals. And if they change their mind and want to go back to traditional Medicare, they have only a 12-month window in which to purchase a Medigap plan without passing health questions. After that, it can be more difficult.

“A lot of people don’t know that if they are in Medicare Advantage for a year, they can get turned down by a Medigap plan or charged really high premiums because of a preexisting condition, which for many people effectively traps them in MA plans,” said Brian Keyser, a research associate at the liberal Center for American Progress and co-author of a recent report on the issue.

There are some exceptions. For example, if a Medicare Advantage plan withdraws from a market or leaves the Medicare program, its enrollees can qualify for a supplemental plan without being asked health questions or charged more for having preexisting conditions.

For this year alone, about 2.6 million people lost Medicare Advantage coverage when their insurer pulled out of their markets, according to KFF, and more than a million lost coverage for 2025. Many switched to other MA plans, but “somewhere around 440,000 of those people did go to a Medicare supplement policy,” sometimes because there was no other MA plan in their area, said George Dippel, president of Deft Research, a Minneapolis-based market research organization focused on insurance for older people. Deft is part of Integrity, the Dallas company.

Some Medicare experts note that anytime insurers enroll people whose health status they can’t consider — whether because of birthday rules or because their Medicare Advantage plan left the market and thus qualified them for an exemption from medical underwriting — it potentially exposes them to more health care utilization and higher costs, making them more likely to increase premiums across the board to offset the possible financial hit.

Another option mentioned by brokers for people looking to lower their costs is to consider one of the two types of Medigap plans that come with a deductible, which is currently just under $3,000 for a year. Those plans charge far lower monthly premiums than Medigap plans that pick up a much larger portion of annual amounts people must pay toward their Medicare services.

Still, “a lot of people are not comfortable with a $3,000 deductible,” Mack said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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2228699
California Lawmakers Seek Protections for Patients in ICE Custody https://kffhealthnews.org/health-industry/ice-custody-immigrant-patient-protection-california-legislation/ Wed, 22 Apr 2026 12:40:00 +0000 https://kffhealthnews.org/?p=2229421 California lawmakers alarmed by the treatment of people brought to hospitals by federal immigration agents want to strengthen protections for detained patients receiving care at medical facilities, including by making it easier for their families and attorneys to find them.

Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by KFF Health News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

KFF Health News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, SB 915, would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

SB 1323, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

KFF Health News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/ice-custody-immigrant-patient-protection-california-legislation/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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2229421
Montana Moves Ahead With Doula Pay but Warns Medicaid Cuts Still May Come https://kffhealthnews.org/medicaid/doula-care-pregnancy-medicaid-montana-budget-cuts/ Wed, 22 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2229052 Montana officials said they are moving forward with plans to allow Medicaid to pay doulas, reversing a previous statement that budget problems had prompted them to pause the effort to reimburse the birth workers.

But officials warned that all optional Medicaid services are still under review as the state health department looks for cuts to offset a shortfall driven by higher-than-expected Medicaid costs.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the agency is preparing a request to the federal government to add doula care to the state’s Medicaid program. It would cost the state about $118,000 in its first year to provide doula Medicaid reimbursements, according to state estimates.

His April 15 comments came three weeks after department officials told KFF Health News that the state budget deficit had put those plans on hold. Ebelt denied that a final decision had been made in March to scrap the doula Medicaid payments, which state lawmakers approved in a bill last year. The coverage is “now proceeding as planned,” he said.

“At the time of your initial inquiry, we were still in the process of analyzing the appropriation,” Ebelt said.

Federal health officials must approve any amendments to the state’s Medicaid program before payments can begin. At least 25 other states reimburse doulas through Medicaid.

Doulas are trained, nonmedical workers who support people through pregnancy and after they give birth. The care they provide is linked to reductions in health complications, which has prompted more states to cover doula services in recent years.

Montana lawmakers who supported expanding Medicaid to cover doula care in 2025 cited scarce maternity services, especially in rural and Indigenous communities. But this year, the state has a Medicaid budget deficit of more than $177 million and is expecting a similar shortfall next year. Plus, federal policy changes slated to take effect later this year are expected to increase costs.

“ There’s a need and a desire for doula services, but a lot of people can’t afford it,” said Sheri Walker, a Helena-based doula and president of the Montana Doula Collaborative. “So that means many of us have other jobs that we have to juggle.”

Walker is a part-time labor and delivery nurse outside of her doula work.

On March 25, health department spokesperson Holly Matkin said in an email to KFF Health News that the agency “will not be moving forward with the implementation of doula services in the Montana Medicaid benefit package at this time.” She had added that it was unclear whether state law gives the department the authority to authorize coverage during the budget shortfall.

State Sen. Cora Neumann, a Democrat who sponsored last year’s bipartisan doula reimbursement bill, said she didn’t know about the department’s plans until she saw KFF Health News’ reporting. Neumann said she and groups that had backed the legislation began calling health officials, making the case for doula services as a low-cost way to provide critical care.

After about a week, Neumann said, state officials told her the agency was moving ahead with doula services after all.

“They were on the chopping block,” Neumann said. “This is a story of how important it is for all Montanans to pay attention and stay connected to what’s happening.”

Ebelt did not clarify what led the department to change its position. However, he warned that optional Medicaid services, such as doula services, may still be cut.

“All optional services, including this service, are being reviewed,” Ebelt said, referring to doula care. He did not respond to a follow-up query as to whether the department might still decide to postpone the program following federal approval.

Optional services are types of care that states choose to cover through their Medicaid programs but aren’t required by federal law. That can include covering eyeglasses, prescription drugs, and prosthetics, and more specialized care such as physical therapy, or inpatient psychiatric services for people under 21.

Those services may not sound optional, said Liz Williams, who studies Medicaid financing at KFF, a health information nonprofit that includes KFF Health News. But she said they’re one of the few avenues states have to make adjustments when budgets get tight.

Congressional Republicans’ One Big Beautiful Bill Act, the spending measure President Donald Trump signed into law last July, is expected to put more states in a budget crunch as its provisions start to take effect by the end of the year. The federal government has estimated that the law will reduce federal Medicaid spending by nearly $1 trillion over 10 years. The law also left states with a higher share of the costs to provide food assistance.

Williams said many states expanded services in recent years by boosting optional Medicaid benefits and provider pay.

“We could see them walk those back,” Williams said.

Montana’s financial problems preceded federal changes. Last year, state lawmakers cut some of the health department’s funding and underestimated Medicaid use. The state also overestimated what the federal government would pay toward Montana’s Medicaid costs.

Health officials must outline a plan to cut costs before the state’s 2027 budget year begins on July 1. Simultaneously, the agency is trying to hire more staffers to begin vetting whether Medicaid enrollees meet or are exempt from new work requirements that also go in place July 1. The new rules, mandated through long-delayed state legislation and the federal spending law, will have a three-month grace period.

Stephanie Morton, executive director of Healthy Mothers, Healthy Babies-The Montana Coalition, said she’s grateful the state is back on track to pay for doula services through Medicaid. But she said she’s worried about potential health care cuts to come.

“We know that doulas are a critical piece of that infrastructure, but standing alone and losing other sources of care really isn’t optimal,” Morton said. “These are not robust systems as it stands.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/medicaid/doula-care-pregnancy-medicaid-montana-budget-cuts/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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2229052
They’re in Remission, but Their Medical Bills Aren’t: Cancer Survivors Navigate Soaring Costs https://kffhealthnews.org/health-care-costs/cancer-survival-costs-testing-treatment-premiums-deductibles-trump/ Wed, 22 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2229400 Nearly four years after doctors declared Marielle Santos McLeod free of colon cancer, she has yet to feel liberated from the burden of medical expenses.

McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors surveyed in 2024, about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Marielle Santos McLeod poses, smiling, during chemo treatment. She holds up fingers on her left and right hands, totaling eight.
McLeod feels burdened by the cost of colon cancer treatment, even though she’s in remission. She’s still paying off chemotherapy bills that followed her 2017 diagnosis, on top of out-of-pocket costs for follow-up monitoring and care. (Gordon McLeod)

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude essential benefits that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

A woman stands inside at an office. She is smiling.
Veronika Panagiotou was 25 years old and uninsured in 2013 when she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she says, “and sent me all the bills.” Now she’s cancer-free and insured through work. But treatment-related expenses still weigh heavily on her life decisions, she says. (Kara Kenan)

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s focus on lowering drug prices as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, according to KFF.

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to research published in 2020.

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, estimates show.

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact KFF Health News and share your story.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Real Estate Investors Profit From Long-Term Care While Residents Languish https://kffhealthnews.org/health-industry/real-estate-investment-trusts-senior-housing-nursing-homes-profit/ Tue, 21 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2228343 By the time she was hospitalized in 2020, Pearlene Darby, a retired teacher, had suffered open sores on both legs, both hips, and both heels, as well as a five-inch-long gash on her tailbone. She died two weeks later at age 81 from infections and bedsores, according to her death certificate. Her daughter sued the nursing home, alleging it had left Darby sitting in her own feces and urine time and again.

The lawsuit, settled on confidential terms last year, blamed not only the managers of City Creek Post-Acute and Assisted Living but also the building’s owner, a real estate investment trust, or REIT.

In the year Darby died, City Creek paid CareTrust REIT more than $1 million in rent, while the Sacramento, California, nursing home ran a deficit, court records show.

Federal tax rules ban REITs from running health care facilities, but CareTrust was not an absentee landlord either, according to internal records filed in the case. It chose the nursing home’s management company and required through the lease that the home keep at least 80% of beds occupied. CareTrust granularly tracked how well the home kept to its financial plan, down to the money spent monthly on nurses and food, the records said. And the documents showed that the real estate company kept tabs on government safety inspection findings and Medicare quality ratings.

A man in a maroon t-shirt and a woman wearing glasses flex their arms together for a portrait
Pearlene Darby, a resident of a Sacramento, California, nursing home, was hospitalized with bedsores and an infection. A surgeon said she was too fragile to survive surgery, her daughter’s lawsuit alleged. The home denied liability and the case was settled out of court. She is pictured here with her grandson Caleb Darby. (Shirlene Darby)

Both CareTrust and the nursing home operator denied liability for Darby’s death. CareTrust officials said in court papers that it is not involved in day-to-day nursing home decisions or patient care, and that it monitors facilities to ensure nothing jeopardizes rent payments. In a written statement, CareTrust Corporate Counsel Joseph Layne told KFF Health News: “We are the property owners, not the operators.”

Landlords With Influence

Over the past decade, real estate investment trusts have bought thousands of buildings that house nursing homes, hospitals, assisted living facilities, and medical offices. A KFF Health News examination of court filings and corporate records shows that these landlords have more influence than the health care facilities publicly acknowledge.

The documents reveal REITs often select the management who oversee the operations and leave them in place even when they are aware of threadbare staffing, floundering governance, repeated safety violations, or other problems that hamper quality of care. A California jury in March awarded $92 million in punitive damages against a former REIT over the death of a 100-year-old resident with dementia who froze to death outside her assisted living facility.

“The REITs are in charge,” said Laraclay Parker, one of the lawyers who represent Darby’s daughter.

Absence of Oversight

Despite their ubiquity, REITs remain invisible to state and federal health regulators. Hospitals and nursing homes are not required to disclose rent payments or landlord identities in the annual reports they submit to Medicare.

Under President Donald Trump, the Centers for Medicare & Medicaid Services indefinitely suspended a Biden-era requirement that nursing homes disclose REIT involvement. Catherine Howden, a CMS spokesperson, said in a statement that the agency does not regulate facilities based on their tax status or corporate form and instead focuses on the quality of the care they provide.

REITs now own a fifth of the nation’s senior housing, which includes assisted living, memory care, and independent living, according to an industry analysis. REITs also hold investments in 1 in 6 nursing homes. Publicly traded REITs that focus on health care are now worth nearly a quarter of a trillion dollars, according to Nareit, an industry association.

While one research study found REIT investments were associated with higher spending on nursing wages, another concluded that after being bought by REITs, nursing homes frequently replaced registered nurses with less skilled nurses and aides. A third analysis concluded that health inspection results were worse after REIT investment.

Researchers also found that investor-owned hospital chains that sold buildings to REITs were more likely to close or go bankrupt, as happened in 2024 with Steward Health Care. Often, private equity investors kept the sale proceeds as profits while the hospitals were burdened with new rent costs. “There were no improvements in clinical outcomes,” said Thomas Tsai, an associate professor at the Harvard T.H. Chan School of Public Health.

REITs are required to distribute most of their income and don’t have to pay the 21% federal corporate income tax on it. There is a catch: A REIT that “directly or indirectly operates or manages” a health care facility loses the tax break for five years. Typically, a REIT leases the property to another company that runs the nursing home or assisted living facility and maintains its tax break. Nareit said health care REITs distributed more than $7 billion in dividends in 2024.

Michael Stroyeck, head of health care analysis at Green Street, a real estate research company, said “there’s definitely a symbiotic relationship” between REITs and facility managers because they have the same goals. He said he has seen REITs replace operators that are having difficulties or go bankrupt.

John Kane, a senior vice president at the American Health Care Association and the National Center for Assisted Living, an industry group that represents nursing homes, said in a statement: “Given government funding often falls short, REITs have been valuable partners in helping to invest in long term care without influencing daily operations.”

A man holds a paper photograph of a woman in his hands for a photo
Leslie Adams holds a photo of his mother, Shirley, who died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to a lawsuit he filed. A court awarded the family $17 million. (Taylor Glascock for KFF Health News)

Low Staffing at a Chain

Strawberry Fields REIT, which like CareTrust trades on the New York Stock Exchange, owns or controls the buildings of 131 nursing home facilities. The nursing home operations inside 66 of those facilities are owned by Moishe Gubin, Strawberry Fields’ chief executive, and Michael Blisko, one of its directors, according to Strawberry Fields’ annual report for last year.

Gubin and Blisko also jointly own Infinity Healthcare Management, which manages their nursing homes; Blisko is Infinity’s CEO. On average, Infinity-affiliated nursing homes provided an hour and a quarter less nursing care per resident per day than the national average of four hours, a KFF Health News analysis of federal records found.

Infinity and several of its nursing homes have recently settled 30 death and injury lawsuits in Cook County, Illinois, totaling more than $4 million, said Margaret Battersby Black, a Chicago lawyer. A jury last year awarded $12 million in a lawsuit brought against Infinity and one of its Chicago nursing homes over the 2023 death of Shirley Adams. A retired candy factory worker, Adams died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to the lawsuit.

“She had wounds that no one could explain,” one of her adult children, Leslie Adams, testified at trial. Medicare gives Lakeview its lowest quality rating, one star out of five.

A photograph of the profile of a man, facing sunlight through a window, as he stands in a room with green painted walls
Leslie Adams poses for a portrait at his Chicago home in the room where his mother, Shirley Adams, lived before she was moved to Lakeview Rehabilitation and Nursing Center. (Taylor Glascock for KFF Health News)

Paul Connery, a lawyer for Adams’ family, said they are still trying to collect on the judgment against the nursing home and management company, which now totals $17 million with interest and attorney fees.

“If I get caught speeding and I went to court, they issue me a ticket and I’ve got a fine to pay,” Adams said in an interview. “How are they able to still continue to move on with business like nothing has happened?”

In a phone interview and an email, Gubin said Strawberry Fields, Infinity, and the nursing homes are all legally distinct and that he has not played an active role in Infinity in more than a decade. He said nursing homes get sued all the time but that the verdict against Lakeview is so large that it will force the home to declare bankruptcy or shut down.

“The whole thing is unfortunate,” Gubin said by phone. “For 15 years they were a perfectly good guardian” and “a well-run building,” he said. “You wouldn’t think it was fair to be judged on your worst day.”

Blisko and an Infinity lawyer did not respond to requests for comment.

Strawberry Fields, which owns 10 assisted living facilities and two long-term care hospitals in addition to the nursing homes, earned net income last year of $33 million from $155 million in rent, a 21% profit margin, securities filings show. Gubin said those weren’t excessive returns.

The exterior of a brick building with a sign that says "Lakeview Rehabilitation & Nursing Center"
The owners and operators of Lakeview Rehabilitation and Nursing Center in Chicago also are directors of the real estate investment trust that owns the building, a securities filing shows. (Taylor Glascock for KFF Health News)

A $110 Million Verdict

Traditionally, REIT leases make the operating companies responsible for paying property taxes, insurance premiums, and maintenance costs. In 2008, Congress gave health care REITs a new option to make money: On top of collecting rents, they could set up subsidiaries and take profits directly from health care businesses. They still must have independent management overseeing care decisions. Many REITs have embraced the role even though the subsidiaries must pay corporate taxes and risk losing money if the businesses do poorly.

Colony Capital was a REIT that through layers of shell corporations owned both the building and the operation of Greenhaven Estates, a Sacramento assisted living and memory care facility. In 2018 Greenhaven paid Colony $1.4 million in rent, nearly a third of its $4.5 million in revenue that year, according to financial records filed in court.

Greenhaven also was on the verge of losing its license, according to a revocation notice filed in November 2018 by the California Department of Social Services. Greenhaven had racked up years of health violations, including from letting untrained workers administer medications, lacking enough employees to care for people with dementia, and neglecting a resident who smeared feces over his body, bed, floor, and bathroom, the notice said.

In February 2019, a few weeks after celebrating her 100th birthday, Mildred Hernandez, a resident with Alzheimer’s, wandered out of Greenhaven in the middle of the night. Her assisted living wing had no exit door alarms even though it housed several residents with dementia, court records showed. Berta Lepe, one of Greenhaven’s caregivers, found Hernandez under a bush, wearing only a shirt and underwear. The temperature was in the 30s.

A woman with white hair and glasses, wearing a blue sweater and a floral shirt, smiles for a portrait
Mildred Hernandez died of hypothermia after wandering out of her assisted living facility in the middle of the night. A jury awarded $92 million in punitive damages against the owner of the home. (Ric Tapia)

“She was talking, but I couldn’t understand what she was saying,” Lepe testified at trial over a lawsuit from Hernandez’s family. Hernandez died of hypothermia a few hours later, according to her death certificate.

Frontier Management, the company that Colony had hired to manage Greenhaven, denied liability and settled the lawsuit on undisclosed terms.

Since the lawsuit, Colony has changed its name to DigitalBridge, which no longer owns Greenhaven and gave up its REIT status. At trial earlier this year, DigitalBridge said resident care was the responsibility of Frontier and that Colony “encouraged” Frontier to address problems. Richard Welch, a former Colony executive, testified that replacing management is disruptive. “I viewed it as a last resort,” he said.

In March, a jury awarded Hernandez’s family $110 million: $10 million in compensatory damages, $92 million in punitive damages against DigitalBridge, and $8 million in punitive damages against Formation Capital, an asset management company.

“REIT money is very detached from knowing about or caring about patient or resident outcomes, because it’s not in their business model,” Ed Dudensing, a lawyer for the family, said in an interview. “Their allegiance is to their investors.”

DigitalBridge has asked the judge to delay finalizing the judgment while its legal challenges to the lawsuit and the verdict are evaluated. A DigitalBridge attorney and a corporate spokesperson did not respond to requests for comment, a Formation attorney declined comment, and a Frontier attorney and a spokesperson did not respond to a request for comment.

‘Wet From Head to Toe’

When CareTrust bought City Creek Post-Acute and Assisted Living in 2019, the Sacramento nursing home where Pearlene Darby lived had a one-star Medicare rating and was losing money. CareTrust leased the building to a management company called Kalesta Healthcare Group based on the business plan Kalesta submitted.

While CareTrust was not the operator, it held periodic phone calls with Kalesta, which provided “a full update of what’s happening at the facility,” including changes in leadership, financial progress, and health inspection survey results, according to deposition testimony by Ryan Williams, a Kalesta co-founder.

According to a state inspection report, in 2020, the year Darby died, City Creek left a resident in soiled linens “wet from head to toe lying in bed” for more than eight hours. During a different visit, a health inspector cited the home after watching a nurse put a dirty diaper back onto a resident after caring for a wound. “It was just a small stool and it is far from where the wound is,” the nurse told the inspector, according to the report.

James Callister, CareTrust’s chief investment officer, said in his deposition that CareTrust officials “review results of regulatory surveys provided to us by the tenant. We review the five-star rating.” He said, “We evaluate results of care, but we do not evaluate types of care given or how or when, no.”

Darby had been living in City Creek since 2011 after a stroke left her in a wheelchair. She needed help getting in and out of bed. From September through November 2020, Darby lost 30 pounds, her family’s lawsuit alleged. During those months, employees dropped her three times as one worker rather than the required two operated the mechanical lift, the lawsuit said.

The suit alleged City Creek failed to reposition her every two hours in bed or her wheelchair, which is the clinical standard for people at risk of bedsores, and to promptly order devices to protect her skin.

In November, the nursing home sent Darby to the hospital. A blood test found bacteria had entered her bloodstream from her feces’ touching open skin wounds, according to the lawsuit. The hospital diagnosed her with sepsis. A surgeon said she needed an operation to redirect fecal waste from her intestines but concluded she wasn’t medically stable enough for surgery, the suit said.

Darby began receiving comfort care measures and was sent back to City Creek. She died two weeks later. In court filings, CareTrust and Kalesta denied the allegations.

In a phone interview, Williams, the Kalesta co-founder, said Darby’s death occurred during the most challenging point of the covid pandemic, when California rules required any nurses testing positive for the virus to be sent home and nurses were quitting out of fear for their health. “It was the most herculean of professional efforts to secure enough staff,” he said.

While expressing sympathy for Darby and her family, he said it was “unconscionable” that personal injury lawyers sued nursing homes over care failures during “the worst of times.”

In court, CareTrust petitioned Judge Richard Miadich to dismiss it from the lawsuit before trial. “This case does not concern a property condition,” CareTrust’s lawyers wrote. “CareTrust is simply a landlord.” But the judge ruled last year a jury should decide whether CareTrust “exercised actual control over City Creek.”

The case was settled out of court a few months later. All parties declined to reveal the settlement terms.

A 67% Profit

As recently as November 2023 — four years after its acquisition — City Creek earned one star from Medicare. It was cited for failing to have the minimum nursing home staffing required by California law during five of 24 randomly selected days in 2022, according to an inspection report. Williams said in the interview that Kalesta had increased spending on nursing over the course of its ownership, including boosting wages, but that it takes a year or two to turn around a troubled nursing home. He said the home’s star rating in 2023 was dragged down by its poor inspection history from before Kalesta took over.

City Creek’s rating has climbed in the past two years, and it now has the top overall rating of five, according to Medicare. Medicare rates City Creek’s current staffing levels as average. That’s better than most nursing homes in more than 200 buildings CareTrust bought before 2025, according to a KFF Health News analysis of federal data. On average, CareTrust nursing homes provided a half hour less nursing care per resident per day than the national average of four hours.

In its statement to KFF Health News, CareTrust’s counsel Layne said the REIT worked to “identify quality operators as tenants,” and that the homes the REIT rents out have more nurses and aides than the minimum required for nursing homes by their state governments. “The operators are licensed by state regulators and retain sole responsibility for operations,” the statement said.

CareTrust, which now owns more than 500 senior housing and nursing home buildings, reported net income last year of $320 million from $476 million in rents and other revenue — a 67% profit margin. By comparison, HCA Healthcare, one of the nation’s largest for-profit hospital and health care chains, reported a 10% profit margin for last year.

Lesley Ann Clement, one of Darby’s lawyers, said cases like hers show the nursing home industry is wrong to complain it lacks financial resources for more staffing.

“There’s plenty of money,” Clement said. “They’re just not spending it on patient care.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/real-estate-investment-trusts-senior-housing-nursing-homes-profit/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Democrats Demand Trump Administration Halt Plan To Collect Federal Workers’ Health Data https://kffhealthnews.org/health-industry/opm-federal-workers-health-records-hipaa-democratic-letters/ Tue, 21 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?p=2228955 Democratic lawmakers are demanding that the Trump administration halt plans to collect sensitive medical records for millions of federal workers and retirees, as well as their family members.

The Office of Personnel Management has asked 65 insurance companies to provide monthly reports with detailed medical and pharmaceutical claims data of more than 8 million people enrolled in federal health plans, KFF Health News reported earlier this month. The request, which could dramatically expand the personally identifiable medical information OPM can access, alarmed health ethicists, insurance company executives, and privacy advocates.

Now, OPM Director Scott Kupor has two letters on his desk — one from 16 U.S. senators and another led by Rep. Robert Garcia, the top Democrat on the House Oversight Committee — asking him to drop the agency’s proposal.

“The collection of broad, personally identifiable data regarding medical care and treatment raises concerns that OPM could target certain federal employees seeking vital health care services that the Administration disagrees with on political grounds,” the Democratic House members wrote to Kupor April 17, citing KFF Health News.

The letters from congressional Democrats alone are unlikely to reverse OPM’s plans. Republicans — who control Congress and, ultimately, any oversight activities — have not weighed in on OPM’s notice.

OPM did not immediately respond to a request for comment on the letters. The agency, which said in its notice that it will use the data for oversight and to manage the federal health plans, has not publicly addressed written concerns about its proposal.

The notice, posted and sent to insurers in December, states that insurers are legally permitted to disclose “protected health information” to OPM and does not provide instructions to redact identifying information, such as names or diagnoses, from the claims.

That data could be used to implement cost-saving measures, health policy experts told KFF Health News earlier this month. But it would also give the Trump administration — which has laid off or fired tens of thousands of federal workers — access to a vast trove of personal information.

In the letters, Democratic lawmakers lay out a number of concerns about potential consequences of OPM’s obtaining detailed medical claims for millions of federal workers.

The letter from Senate Democrats — led by Adam Schiff of California and Mark Warner of Virginia — argues that OPM is not equipped to safeguard such sensitive data and that the administration could share the records across government agencies, as it has done with personal information on millions of Medicaid enrollees.

They also assert that the agency does not have a legal right to the data and that insurers’ sharing the information with OPM would “violate the core principles of the Health Insurance Portability and Accountability Act.” HIPAA requires certain organizations that maintain identifiable health information — such as hospitals and insurers — to protect it from being disclosed without patient consent. The proposal, the senators warn, threatens patients’ relationships with their clinicians, especially “sensitive disclosures regarding mental health, chronic illness, or other deeply personal conditions.”

“For these reasons, we strongly urge you to cease any further consideration of this proposal,” states the letter, which was sent to Kupor on April 19.

The American Federation of Government Employees, the largest union for federal employees, responded with alarm to KFF Health News’ reporting. The union noted in a statement from its national president, Everett Kelley, that OPM’s proposal “comes in the context of coordinated attacks on federal employees and repeated stretching of the legal boundaries for sharing sensitive personal data across government agencies.

“The question of what this administration intends to do with eight million Americans’ most private health information is not academic,” the AFGE statement read. “It is urgent.”

In an emailed statement, Kelley applauded the congressional letters.

“We are pleased that Democratic lawmakers on the Hill are just as outraged as we are over this administration’s blatant attempt to breach the privacy of millions of Americans across the country,” Kelley wrote. “We share their concerns regarding potential misuse of the information to continue illegally targeting workers and their demand for OPM to withdraw this proposal.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/opm-federal-workers-health-records-hipaa-democratic-letters/">article</a&gt; first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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The Accidental Architect of America’s Drug Patent Problem https://kffhealthnews.org/podcast/an-arm-and-a-leg-alfred-engelberg-accidental-architect-drug-patent-thicket/ Mon, 20 Apr 2026 09:00:00 +0000 https://kffhealthnews.org/?post_type=podcast&p=2228494 Depending on whom you ask, Alfred Engelberg could be a hero or a villain in the story of American pharmaceuticals. The patent lawyer helped write legislation that led to a dramatic increase in the number of generic drugs on the market. He also contributed to a patent system that gives pharmaceutical companies monopolies on their most lucrative drugs, blocking generic competition and keeping prices high along the way. 

An Arm and a Leg host Dan Weissmann traces Engelberg’s story back more than 50 years, from a scrappy childhood on the Atlantic City boardwalk to watching President Ronald Reagan sign his bill into law at the White House Rose Garden. Today, Engelberg advocates for policy changes he believes will enable more generic drugs to reach the market faster. 

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on "All Things Considered," Marketplace, the BBC, 99% Invisible, and "Reveal," from the Center for Investigative Reporting.

Credits

Emily Pisacreta Producer
Claire Davenport Producer
Adam Raymonda Audio wizard
Ellen Weiss Editor
Click to open the Transcript Transcript: Why drugs cost so much, 101: Medicine monopolies

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there–

We are kicking off a new series here — We’re calling it An Arm and a Leg 101.

We’ve spent years of reporting on two huge questions: Why does health care cost so freaking much? And what can we maybe do about it?

We’ve been chasing answers one story, one question at a time.

Now, we’re pulling together some of what we’ve learned. Digging a little deeper, going a little broader.

Starting with why so many drugs cost so much.

One of the first questions I ever asked — one of our first stories — was: How can insulin be so expensive? Wasn’t it discovered in the early 20th century? Shouldn’t it be a generic drug by now?

You know, cheap? 

And part of the answer I got was: Insulin has been transformed since the early 20th century. A lot.

A medical researcher named Jing Luo told me: Today’s insulins are a long way from what we had a hundred years ago.

Jing Luo: They’ve been really modified at a molecular level. It’s cool stuff. It’s super cool stuff. And you know, there are multiple Nobel prizes in physiology and medicine that have made this happen.

Dan: And all that super-cool stuff, those amazing discoveries, got patented.

Meaning: The patent-holders– the pharma companies — got a monopoly on those amazing discoveries.

The pharma companies claimed patents — and monopolies– on a bunch of other things too. Not all of them amazing.

But each new patent can mean another delay for a generic version coming to market.

Jing Luo: Companies can stack dozens of patents on top of each other to try to thwart generic competition because they can say, look, we’ve got three patents on the active ingredient. We’ve got patents on the medical uses of the active ingredient. We’ve got patents on the non-active excipient associated with this ingredient. We’ve got multiple patents on the devices, and so you who are trying to enter this space will sue you for patent infringement on all of them.

Dan: A patent guarantees you at least a 20-year monopoly. Drugs can generally get an extra five. 

And these extra patents — secondary patents –can keep you protected LONGER. If you don’t file them at the same time as the original: 

To talk about a drug that’s in the news right now. The original patent on the active ingredient in Wegovy and Ozempic actually expired this year.. The extra five years extends it to the early 2030s. 

But dozens of extra patents — secondary patents, filed later — mean that here in the U.S., we might not see cheaper generic versions until 2042. Or later.

And as Jing Luo told me: This strategy isn’t a secret. It’s an industry cornerstone. 

Jing Luo: When you listen to these like CEOs of pharma companies being interviewed at CNBC, you know, they’d be like, well, what about generic competition for this product? And they’ll just keep saying, no, no, no. We’ve got this really robust patent portfolio. We can withstand any challenge. We’re gonna tie this up in courts forever and don’t worry about it.We’re gonna continue this gravy boat for a long, long time. That’s the way they reinsure investors.

Dan: A robust patent portfolio. ?Or what researchers and advocates call a patent thicket.

They say quality matters less than quantity. 

The numbers are wild. 

According to one study, the 10 best-selling drugs for 2021 — drugs for cancer, HIV, arthritis — were protected by a combined total of seven hundred and forty-two patents. With hundreds more “pending.”

When these add-on patents get challenged in court, they actually get tossed out more often than primary patents..

But lawsuits cost money. A robust patent portfolio — a patent thicket — means generic companies would need to be ready to file a LOT of them.

So, we wanted to know: How did all this happen? How did these games get started?

It turns out, there is one guy who can tell you the story from the beginning, for better and for worse. Who helped shape it. Made millions of dollars from it. Saw its flaws. And has spent most of the last 30 years trying to fix them. Hie’s a lawyer named Al Engelberg, and he’s 86 years old.

Alfred Engelberg: I tell people all the time, I live in a world, a pharma world where half the people think I’m dead and the other half wish I was.  

Dan: Al Engelberg’s story is the story  of generic drugs in America. And it’s a wild ride. 

This is An Arm and a Leg — a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful.

?Al Engelberg’s parents fled Nazi Germany in the late 1930s.

He was born here, less than a year after they arrived. They had nothing.

And  here’s where they made their new life. 

Retro news reel: We are flying over a well-known eastern city. That is remarkable because manufacturing is almost non-existent. A city whose principle business is the entertainment of millions. Atlantic city, often called the vacation capital of the nation

Dan: Al likes to say he learned most of what he knows about practicing law on the Atlantic City boardwalk, by the time he was 16. 

Alfred Engelberg: We grew up very, very fast there. I started working when I was about nine or 10 and, and there were lots of opportunities on the boardwalk. 

Dan: His first “job” was crawling around under the boardwalk, looking for loose change.

Alfred Engelberg: But I went on to work at hotdog stands and at an illegal bingo game for the local mob.

Dan: And in every job, Atlantic City drove home its major lesson: Cheating — hustling — is something you’ve gotta expect. 

At this illegal bingo parlor, Al’s job was walking between tables, doling out bingo cards for a dime apiece. The bosses hired college kids to walk behind kids like Al, to keep him honest.

Alfred Engelberg: I mean, these guys are running an illegal game, but they still need to count, and they still inherently don’t trust anybody. 

Dan: Which was correct. Al says the college kids had their own hustle: They’d have him set aside a dollar or two before turning in his dimes — split that dollar with him fifty-fifty — and tell the bosses Al’s count was fine.

Alfred Engelberg: And everybody knowing that the counts were wildly inaccurate anyway ‘cause the little old ladies were, were stealing cards. Everybody in the room had their own thing going, you know, from the customers on.

Dan: After Al made it out of Atlantic City, his unique on-the-job education continued. He studied chemical engineering at Drexel, then took a job as a patent examiner while going to law school at night.

And at that job, he learned: The patent system was ripe for hustling.

Partly because most of his colleagues weren’t necessarily giving the job their all. 

Like him, most patent examiners were working their way through law school. And they were sneaking time to study on the job.

Alfred Engelberg: We used to be able to cut our notes down so they fit in these file drawers with the patents. And we would be reading your notes and if your boss came by, you would just drop a patent on top of the notes.

Dan: You could say it was Atlantic City all over again. Everybody in the job is sneaking something for themselves — in this case, time.

And Al Engelberg could see that, even if his colleagues gave it their all, they were too green to do their job well. 

A patent examiner’s job — deciding whether a proposed invention deserves a monopoly (which at that time was 17 years) — means deciding whether the idea for that invention would be obvious to “a person of ordinary skill in that field.”

Alfred Engelberg: And most of the examiners had never worked in that field and had absolutely no idea. And this is the big leagues. You’re granting somebody a monopoly for 17 years, and it seemed ridiculous on its face.

Dan: Al cut his own path at the patent office. He’d worked his way through engineering school, in manufacturing plants, he saw what people of ordinary skill in that field solve problems every day. So he specialized in examining patents he actually knew something about.

That got him promoted, then it got him recruited by a corporate lawyer.. After the company paid his way through the rest of law school, he jumped to the Justice Department. 

He was ambitious– he wanted experience junior lawyers don’t usually get — like trying cases of his own.

After a few years doing just that, he took a job with a small law firm in New York City in 1968.

Alfred Engelberg: I came to New York to private practice at the age of 30 and I was ready to go. I mean, I was ready to, to tear the world apart and I did.

Dan: Patents were still a specialty. Then, in 1973, he gets a call that leads to his first generic drug case.

Generic drugs were not a hot market at the time.

Alfred Engelberg: ?The generic drug industry in 1970s was essentially, a half a dozen, privately owned family businesses, mostly in the metropolitan New York area. And most of the drugs that they were selling were drugs that were approved before 1962. 

Dan: Yeah. 1962 is when the FDA made it harder to get a new drug approved — you had to go through long clinical trials to show that your drug was safe and effective. 

Even if your drug was a generic version of an existing drug. Those little companies didn’t have the capital to run those trials, so they were stuck selling those old drugs.

Not much of a business. Maybe 20 percent of prescriptions were for generic drugs.

So when Al Engelberg got a call for his first generic drug case, that was the context. And the case itself did not sound promising. For one thing:

Alfred Engelberg: The call wasn’t even from the client. It was from a bank. The client was bankrupt. 

Dan: The client was bankrupt. This bankrupt client, Premo Pharmaceuticals, was getting sued for patent infringement. The bank was willing to put up ten thousand dollars for a defense. Nowhere near enough to actually try a case. Oh, and…

Alfred Engelberg: From what they told me, the information they gave me, we didn’t have a very good defense.

Dan: But Al Engelberg saw an opening. He could see that his opponents have weaknesses too.

Alfred Engelberg: The patent owners were in a very strange position. If they won, they got nothing because we were already bankrupt. Two, they were gonna have to spend the legal fees to win.

Dan: Win against a young lawyer named Al Engelberg who already had a rep as a tough opponent. So they could lose.

Alfred Engelberg: And if they lost, they would lose millions and millions of dollars in business because there wouldn’t be a patent. And they’d have competition from generic drugs.

Dan: And meanwhile, Al Engelberg is also sizing up the judge. He knows the guy doesn’t love patents.

So Al shows up to the first conference and he bluffs. 

Alfred Engelberg: I said to the judge, oh, your Honor, you know, it’s another one of those patents. They’re all invalid. And I said, we don’t need very much discovery. We’re, we’ll be ready to go to trial in a few months. Just set a trial date.

Dan: The other side walks out beside themselves.

And within a couple of weeks they call Al to say: Hey, how about this? You guys just acknowledge our patent is OK, and we’ll give you the money we would’ve spent litigating. Call it 400,000 bucks?

Alfred Engelberg: I called the client and said, how’s $400,000? He said, are you kidding?

Dan: They didn’t just get out of trouble — they got out of bankruptcy, with $400,000 in their pockets. Because Al Engelberg knew how to size up a situation.   

Alfred Engelberg: You don’t learn that in law school. That’s not what they teach.

Dan: Word gets  around about that case, and pretty soon everybody in the generic drug world is calling him.

It’s a small world, but by the end of the 1970s, there may be room for it to start getting bigger. 

People are starting to notice: Drugs are expensive. Maybe there should be more cheap generics. 

Some generic drug companies form an association and start lobbying: Make it easier to get generic drugs to market without having to go through all those trials.

The brand-name drugmakers push back: They say it takes so long to run the trials and get their drugs approved, they don’t get enough time to make money before those patents expire.

In 1983, Democratic Representative Henry Waxman steps in to broker a compromise, with Republican Senator Orrin Hatch.

And Mr. Engelberg goes to Washington. To run strategy for the generic drugmakers. 

Alfred Engelberg: In a lot of ways , that’s where my Atlantic City training really helped me at the end of the day

Dan: There were a lot of people, with a lot of interests. A lot of angles. ?He starts commuting from New York to Washington DC a couple times a week — for months and months, more than a year.

And Al Engelberg says: This time, it wasn’t just about winning a case.

Alfred Engelberg: I was in the back of a cab the way I remember, with the senior partner of the law firm. And he says to me, why are you breaking your ass going to Washington two or three times? Why don’t you send an associate? You know, it’s just like, it’s just another case. And I said. I said, are you kidding? I said, you know, how many lawyers ever get to do what I’m doing right now? To be at the table influencing what may be a major law that’s gonna have major consequences is, is like something I never thought my whole life I’d be doing.

Dan: A kid from Atlantic City was exactly the right person to try to balance all the angles, negotiate a compromise. It took more than a year. It almost didn’t happen. But then it did. Congress passed the bill, and President Ronald Reagan got in front of cameras to sign it.

Ronald Reagan: Let me turn my attention to the real reason we’re here this afternoon, signing into law the Drug Price Competition and Patent Term Restoration Act of 1984. 

Dan: better known as Hatch-Waxman.

Hatch Waxman had three basic components:

One: Brand drugmakers got a few extra years on their patents.

Two: Generic drugmakers got a pathway to get FDA approval.

And three –The new law laid out rules for a generic drugmaker when they wanted to CHALLENGE an existing patent. 

Negotiating that third part was the part where Al Engelberg’s education on the Atlantic City boardwalk, and the U.S. patent office, and the generic drug industry came together: The result would make him millions and millions of dollars — and blow a giant hole into the grand bargain he had worked so hard to bring about.

That’s coming right up.

This episode of An arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. The folks at KFF Health News are amazing journalists — their work wins all kinds of awards, every year. We are honored to work with them.

So. The brand-name drug makers and the generic drug makers struck a deal. That deal was good for them. Both sides got something big out of it. The public was supposed to get something out of it too.

And, to be fair, we did: Remember, back then, maybe one out of five prescriptions was for a generic drug. Now it’s nine out of ten.

But we pay more than ever for drugs. Mostly for branded, patent-protected drugs. And the biggest, most-important, most profitable drugs get locked behind patent thickets.

How did that happen? 

Well, to understand that, it helps to know what Al Engelberg got out of the whole bargain.

Al had been there at the bargaining table, on behalf of the generics. 

One day, during those negotiations, he was in the office with Henry Waxman’s lead counsel, a guy named Bill Corr, when Corr got a call from someone on the other side.

Corr starts pointing at the phone, pointing to Al — indicating: This guy is talking about you.

When Corr gets off the phone he says: That guy’s not sure about this deal where bad patents could be challenged. He’s suspicious about where you might take this. Like, are you just gonna set up a bounty-hunting operation, to get patents declared invalid?

And Corr said, Al, would you do that? 

Alfred Engelberg: And I said, you know, Bill, until this moment, I’ve never given it any thought, but it’s a hell of a good idea. Maybe I’ll look at it. 

Dan: And he did. Starting almost as soon as Hatch-Waxman became law.

Alfred Engelberg: And we sat in the rose garden, September 23rd, 1984, watched Reagan sign the bill. And in December of that year, I sat down at my kitchen table with a yellow pad and I laid out a strategy.

Dan: If you were gonna set up a bounty-hunting operation, how would you do it?

Al Engelberg knew a lot of patents were garbage. Knew it from his time in the patent office, knew it from practicing law. And he knew how much money a successful patent challenge could be worth.

The way Hatch-Waxman worked: If a generic drug company challenged a patent and won, they would get six months before any OTHER generic drugmakers could get a crack at the market.

So their only competition would be the brand. If a pill cost two cents to make, and the brand was selling for a dollar a pill — that’s 98 cents of profit for every pill.

You’re the only competitor? You could charge 75 cents a pill and get 73 cents of profit. On a hit drug, you could make millions and millions — just in those six months. 

Al’s idea was this: Partner up with a generic drugmaker. Go find cases– drugs with weak patents. Win ’em. 

And split those millions in potential profits fifty-fifty. 

Al pitched a generic drugmaker — they were ready to go — and brought the deal to his law firm. .

Alfred Engelberg: As it turned out, my partners weren’t interested in having me do this. They tried to talk me out of it.

Dan: But they couldn’t. So he left. Went out on his own. All on his own.

Alfred Engelberg: I never hired a single soul, not even a secretary. And I couldn’t type. I still can’t type.

Dan: But he hunted and pecked his way through brief after brief. He bought an early portable computer — it weighed thirty pounds — and lugged it around in the back of his car. For ten years.

Alfred Engelberg: It was stupid. I almost killed myself. But, it worked out okay.

Dan: Yeah. Turns out Al was really good at finding the problems with drug patents.

In one of his first cases, Al Engelberg personally made more than 70 million dollars. Others settled: A few million here, a few million there– it adds up.

And then…

Alfred Engelberg: It got to be the mid nineties, and I was working on a case called Buspar. 

Dan: The Buspar case ended up a big winner for Al Engelberg and his generic drug partners. 

But it had consequences that went way beyond a single case. And led to big losses for the public.. Here’s how it went.  

Alfred Engelberg: Buspar was an anti-anxiety drug. And by all accounts not a very good one.

Dan: But Bristol Meyers Squibb invested in big advertising and marketing campaigns.

Speaker 5: I feel anxious. I can’t concentrate. 

Speaker 6: I’m so irritable. If you. You suffer from excessive worry. It can feel like a mountain of anxiety. 

Speaker 5: I’ll never get it all done. I’m overwhelmed. 

Speaker 6: But a prescription medication called buspar can help.

Dan: And all that marketing did its job. By the mid-1990s, Buspar was making more than 200 million dollars a year for Bristol.

Alfred Engelberg: The only problem for them was that the drug was not new. 

Dan: The active ingredient was well-known in medical literature as a tranquilizer. Nobody had bothered to market it.

So Bristol Myers Squibb filed a patent on it, claiming it had discovered a new use for this well-known tranquilizer: Treating anxiety.

Al Engelberg says when he read the patent application, he could barely believe it: What do tranquilizers do if not… treat anxiety?

It’s like saying: There’s this stuff called sugar. We’re gonna take out a patent on using it as a sweetener.

This looked like a case for a guy from Atlantic City. 

Alfred Engelberg: I did something that lawyers don’t. That’s just the way I was built. 

I filed a motion with the court and basically said, we don’t need any evidence.

You just have to read the patent. If you believe it’s true, the patent’s invalid. Just, you know, all you need is a dictionary basically.

Dan: Al says Bristol was eager to settle. 

Alfred Engelberg: We get into a settlement discussion and we keep saying, no, no, no, no.

Dan: Al’s partners had done the math: They figured they stood to make a hundred million dollars or more once they won. So when the other side offered 25 million, no was the easy answer.

Alfred Engelberg: We said, why are we gonna take this? You know, it’s crazy. There’s a reward here we know what it is. We’re gonna get it eventually.

Dan: Al sits down with a lawyer from the other side, a guy he knows, explains how he sees the math.

And soon the other side comes through with a much bigger offer: 72 million dollars – almost three times as much. 

Alfred Engelberg: And I’m sitting there like, what are you crazy? But then think about it from their point of view. 

Dan: Paying 72 million dollars is nothing, compared to what Bristol stands to gain if this lawsuit goes away. 

With their monopoly, Bristol Meyer Squibb is making more than 200 million dollars a year on Buspar. And unless somebody else lines up to do what Al Engelberg had done, expect to keep that monopoly for years.

Charging whatever they want. Two dollars a pill, three dollars a pill. Which Al Engelberg says is exactly what happened.

In fact, they kept that monopoly for like five years. 

Alfred Engelberg: As it turned out, nobody came behind us. And so, they had that monopoly until 2000. So they got five years of 2 billion, in gross profits. 

Dan: They made out.

Alfred Engelberg:  For the cost of $75 million. And you know, the public got screwed ’cause they are continuing to pay, you know, $2 a pill or $3 a pill for a drug that eventually ends up being available for 20 or 30 cents. Um, so that’s, that’s how it works.

Dan: That’s how it works. The branded company and the generic company both make out great. Cheaper generic versions of a drug get delayed. 

That amazing payday for Al Engelberg and his partners at the generic drug company turned into a model a template for the kind of deal that every generic drug company would want in on.

It got a nickname: Pay for delay.

Alfred Engelberg: That spread through the industry like wildfire, those numbers, you know, you don’t make those numbers half a cent at a time on, on pills,

Dan: Lawsuits were way more profitable.

But Al Engelberg wasn’t filing them.

A year or so after the Buspar case settled, sparking the Pay for Delay gold rush, he retired. He had plenty of money and nothing to prove.

And in retirement, he started evaluating what he’d accomplished, for better and for worse.

For better, generic drugs had more than doubled their share of the market since Hatch-Waxman took effect.

For worse, he could see two places where — despite all of his Atlantic City training — he had missed a couple of angles in negotiating Hatch-Waxman. 

One was: this whole pay-for-delay scheme. Turned out, in balancing incentives for brands and generic makers, he’d left open this perverse incentive that left the public out. 

And the second was a loophole  that Hatch-Waxman had left open.: 

It created a process where players like Al and his generic partners could challenge patents on drugs like Buspar, that they thought didn’t deserve protected monopolies. It removed some friction for those attacks. 

The drug companies developed a way to add more friction:  stacking extra patents — secondary patents — on every drug.

Developing patent thickets.

Even if a secondary patent is trivial  — and lots of them do get tossed out — challenging it means a court fight. And that costs money.

Alfred Engelberg: It caused the big drug companies to just get more and more patents. Because why not? You know, there was nothing standing in the way.

Dan: I mean, nobody knows better than Al Engelberg: Patent examiners don’t exactly stand in the way. 

And those patent thickets and pay for delay, they feed on each other. 

Alfred Engelberg: The economics of the business, caused these kinds of settlements to reach epic proportions. So the generic companies would, challenge these secondary patents and, the drug companies would pay them off.

Dan: In 1999 he published an article in a scholarly journal arguing that Hatch-Waxman needed a reboot. Even the six-month head start for a successful challenge could probably go. 

And ever since — for more than twenty-five years — he’s poured millions of dollars into efforts to tighten the rules. Funding research. A public-information campaign from Consumer Reports. Even a center for IP law at his alma mater, NYU.

It hasn’t always gone his way. 

Pay for delay has gotten much bigger since Al Engelberg wrote his first article calling for reform: He wrote in 1999 that about two dozen patent challenges had been filed.

Now he estimates that number at twelve thousand.

Alfred Engelberg: I can’t tell you how many tens of billions of dollars in legal fees that is. It’s one of the fastest growing and and steadiest industries for big law.

Dan: A Hatch-Waxman litigation forum on LinkedIn has more than fourteen thousand members.

And Hatch-Waxman doesn’t cover many of today’s the top-selling drugs– the biggest moneymakers. They belong to a class called “biologics.”

That includes famously-expensive rheumatoid arthritis drugs like Humira and Enbrel — and insulin. 

Biologics weren’t a category forty years ago when Hatch-Waxman got negotiated. Congress passed a new law to deal with them in 2010 — ?the Biologics Price Competition and Innovation Act.

Al Engelberg is not a fan of that law.

Alfred Engelberg: Whatever mistakes were made in Hatch Waxman, they were multiplied by 10 and deliberately in the biologics law

Dan: He says the all but encourages patent thickets. And doesn’t provide a pathway to challenge them.

He says it reminds him of some of his early days practicing law.

Alfred Engelberg: Back in the seventies, we used to have small startup clients in the computer field, and they would get letters from IBM. It says, we are ready to inform you that you may be infringing one or more of the following patents. And there was a 10 page list of patents attached. And the startup would come to us and say, you know, what should we do? And we would say, find another line of work, you know, what are you gonna do?

Dan: But he has not given up. In 2025, he published a book: Breaking the Medicine Monopolies.

It tells the story of his career — and lays out his prescriptions for fixing the problem.

He doesn’t JUST focus on plugging the holes in Hatch-Waxman and the biologics law.

Alfred Engelberg: You know, we don’t actually need a generic drug industry. We need generic drug pricing. 

Dan: He’s got proposals for an increased government role in negotiating and regulating prices — and more than that.

He argues that a 1980 law allows the government to commisssion generic versions of drugs that were developed using public research dollars.

He also says the FDA rules that protect secondary patents on drugs — that allow patent thicketing — are based on a completely wrong interpretation of Hatch-Waxman.

And tells us he’s working up a challenge, with help from AI tools like Claude. 

He’s 86 years old. And he doesn’t seem inclined to stop.

Alfred Engelberg: It so changed my life and I did so well by it, I thought, how can I not take on this problem? Who’s gonna do it if I don’t do it?

Dan: He’s got the time. Money’s no object. And he knows the territory as well as anybody. He helped create it. 

Alfred Engelberg: So it’s, it’s my obligation really. It’s that sort of Jewish guilt. What can I tell you? I’m paying back for the bingo game.

Dan: So we’ve gone back more than fifty years on the question: Why aren’t there more generic drugs? We’ve learned why we’ve got the ones we have, and what stands in the way of getting more.

And that is just in time. Because this spring the U.S. Supreme Court will hear arguments in a case that could restrict the generic drug pipeline even further. It could have major implications.

And understanding what they are requires all of the 101 we’ve covered here. We’ll have that story for you in a few weeks. Til then, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from Dan Weissmann— and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

This series — An Arm and a Leg 101 — is made possible in part by support from Arnold Ventures. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

 Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support.


“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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