Health and Fitness Tips

The Rich and Powerful Want to Live Forever

From the Kremlin to Silicon Valley, some of the most powerful people in the world now want something more: eternal life.

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A ‘Barbaric’ Problem in American Hospitals Is Only Getting Bigger

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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New Gene Therapy Enables Children With a Rare Form of Deafness to Hear

The treatment, the first of its kind, was approved by the Food and Drug Administration on Thursday. “Our baby was born deaf, and now he can hear,” said one parent.

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The ‘Make America Healthy Again’ Movement Is Cooling on Trump and Republicans

Vaccine skeptics, ‘organic moms’ and environmental activists came together to elect President Trump. But some voters are disillusioned and might not turn out again.

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Medigap Premiums Leap, and Consumers Have Few Alternatives

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.

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Listen: With Little Federal Regulation, States Are Left To Shape the Rules on AI in Health Care

LISTEN: Quashing innovation or risking a patient’s health? Lauren Sausser told WAMU’s Health Hub on April 15 why the White House and some states are at odds over how to regulate AI in health care.

Speed, efficiency, and lower costs. Those are the traits artificial intelligence supporters celebrate. But the same qualities worry physicians who fear the technology could lead to insurance denials with humans left out of the loop.

With scant federal regulation, states are left to shape the rules on AI in health care. For residents in the Washington, D.C., metropolitan area, a divide is playing out on opposite sides of the Potomac River. Maryland and Virginia have taken very different approaches to regulating AI in health insurance.

KFF Health News correspondent Lauren Sausser joined WAMU’s Health Hub on April 15 to explain why where you live may determine how much of a role AI plays in your coverage.

This <a target="_blank" href="https://kffhealthnews.org/health-industry/wamu-health-hub-ai-state-regulation-april-15-2026/">article</a> 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" style="width:1em;height:1em;margin-left:10px;">

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Cae la inscripción de inmigrantes en Medi-Cal y expertos lo atribuyen a las políticas de Trump

Durante meses, un clima de mucho miedo se ha instalado en la comunidad inmigrante de San Bernardino, California. Esto ha hecho más difícil el trabajo de María González como promotora de salud en esta ciudad donde casi una cuarta parte de los habitantes nació en el extranjero.

La situación comenzó a agravarse durante el verano, impulsada por las noticias sobre redadas migratorias en todo el sur de California, los planes de la administración Trump de compartir datos de Medicaid con el Servicio de Inmigración y Control de Aduanas (ICE) y la aprobación de restricciones estatales y federales sobre el derecho de los inmigrantes a acceder a Medicaid.

Luego, en noviembre, el gobierno federal publicó una nueva propuesta sobre la “carga pública” que, de aprobarse, podría impedir que determinados inmigrantes obtuvieran la residencia legal permanente si ellos o sus familiares han utilizado beneficios públicos, incluido Medicaid.

Muchos de los pacientes de González y sus hijos, que a menudo son ciudadanos estadounidenses, todavía califican para el programa Medicaid de California, conocido como Medi-Cal, que brinda cobertura de salud a más de 14 millones de residentes con bajos ingresos o discapacidades. Pero, cada vez más, esas personas prefieren no inscribirse ni renovar su cobertura.

“Muchos no quieren solicitar la cobertura”, afirmó González. “Hay quienes dicen que ni siquiera se atreven a salir a regar sus plantas”.

Datos de Medi-Cal sugieren que lo que algunos defensores de inmigrantes llaman una “pandemia de miedo” ha comenzado a reducir la inscripción en el programa de Medicaid más grande del país. Un análisis de KFF Health News encontró que, de junio a diciembre, el mes más reciente para el que hay datos disponibles, casi 100.000 inmigrantes sin estatus legal salieron del programa. Representan alrededor de una cuarta parte de todas las bajas de Medi-Cal, aunque este grupo constituye aproximadamente solo el 11% de los inscritos.

Esto marca un cambio de rumbo respecto del aumento constante en la inscripción de inmigrantes sin estatus legal en el estado. Hasta julio, las inscripciones de este sector habían aumentado cada mes desde que, en enero de 2024, el estado abrió Medi-Cal a todos los residentes de bajos ingresos sin que importara su estatus migratorio.

Tessa Outhyse, vocera del Departamento de Servicios de Atención Médica (DHCS), que supervisa Medi-Cal, afirmó que no hay evidencia de que los inmigrantes se estén dando de baja del programa en mayor proporción que otros grupos. En general, la inscripción en Medi-Cal ha disminuido en alrededor de 1,6 millones desde su punto más alto en mayo de 2023.

Outhyse atribuyó la caída a la reanudación de las verificaciones anuales de elegibilidad, que se suspendieron durante la pandemia de covid-19. California es uno de los 14 estados que, junto con Washington, D.C., financian cobertura de salud para, al menos, algunos inmigrantes que no califican para Medicaid o el Programa de Seguro de Salud para Niños bajo las reglas federales.

Pero dos investigadores, Leonardo Cuello, del Centro para Niños y Familias de la Universidad Georgetown, y Susan Babey, del Centro de Investigación de Políticas de Salud de UCLA, cuestionaron esa explicación. Señalaron que California y la mayoría de los otros estados ya habían reanudado completamente las verificaciones de elegibilidad a mediados de 2024.

Sin embargo, Tony Cava, vocero del DHCS, aseguró que esas revisiones continuaron reduciendo la inscripción hasta 2025.

Cuello agregó que los cambios federales aprobados por los republicanos en la ley One Big Beautiful Bill Act, que se espera provoquen más bajas, no entran en vigor hasta dentro de algunos meses.

“Tenemos muchos factores importantes que aún no han ocurrido y que provocarán la pérdida de cobertura”, explicó Cuello. “Pero la pérdida de cobertura que está ocurriendo ahora parece estar en gran medida relacionada con el miedo de los inmigrantes”.

Encuestas dan algunas pistas

Una encuesta de KFF/New York Times encontró que, en todo el país, los adultos inmigrantes, especialmente los que son padres, están evitando cada vez más incluirse en programas gubernamentales que ayudan a pagar alimentos, vivienda o atención médica para no llamar la atención sobre su estatus migratorio o el de algún familiar. Esto incluye a residentes con estatus y a ciudadanos naturalizados.

Cuello dijo que la tendencia a evitar estos programas por parte de los padres es especialmente preocupante porque aproximadamente 1 de cada 4 niños en EE.UU. tiene al menos un padre inmigrante. Aunque la mayoría de esos niños haya nacido en el país.

También opina que esa decisión de las familias puede explicar una disminución nacional de casi 3% en la inscripción en Medicaid y el Programa de Seguro de Salud para Niños durante los primeros 10 meses del año pasado, incluida una caída de 5,6% en la inscripción de niños en California, según datos recopilados por investigadores de Georgetown.

Los patrones de inscripción durante la primera administración Trump también ofrecen pistas. Por ejemplo, el presidente amplió los criterios de carga pública para incluir el uso de Medicaid y asistencia para alimentos y vivienda. Esto llevó a muchas familias inmigrantes, incluidos niños ciudadanos y personas no afectadas por la regla, a renunciar a Medicaid y otros programas para los que eran elegibles. Algunos continuaron evitando estos programas incluso después de que varios tribunales bloquearon su implementación y el presidente demócrata Joe Biden revocó la regla.

“La medida generó un alto nivel de confusión”, señaló Louise McCarthy, presidenta y directora ejecutiva de la Asociación de Clínicas Comunitarias del condado de Los Ángeles, que representa a unos 70 centros de salud en la zona. “El personal de los centros de salud comunitarios aún está trabajando para revertir los efectos de la primera regla”.

Ahorros estimados

Actualmente, solo las personas que dependen de programas de asistencia en efectivo o de atención institucional a largo plazo financiada por el gobierno pueden ser consideradas un riesgo de carga pública cuando solicitan una visa para entrar al país o gestionan la residencia permanente legal.

Pero bajo la propuesta de la administración Trump, Medicaid y otros programas sin entrega directa de dinero, así como el uso de beneficios por parte de familiares, podrían usarse para evaluar si es posible que una persona termine dependiendo del estado. Los oficiales de inmigración también tendrían mayor autoridad para decidir cuáles factores convierten a alguien en carga pública.

La propuesta del Departamento de Seguridad Nacional (DHS) indica que los cambios son necesarios porque las reglas actuales limitan la capacidad de la agencia para evaluar el riesgo de que un inmigrante dependa de recursos gubernamentales. El período de comentarios públicos terminó en diciembre.

El DHS no respondió a una pregunta respecto de cuándo tomará una decisión final sobre la norma. La propuesta indica que “estaría en línea con una política de larga data: según la cual los extranjeros en Estados Unidos deben ser autosuficientes y los beneficios estatales no deben incentivar la inmigración”.

La agencia calculó que esa modificación podría ahorrar a los gobiernos federal y estatales casi $9 mil millones al año gracias a personas que se den de baja o decidan no inscribirse en programas públicos.

En una carta en apoyo a esa iniciativa, el Center for Immigration Studies, una organización conservadora que promueve restricciones migratorias, describió la regla actual de carga pública como demasiado limitada y dijo que impide a los funcionarios de inmigración considerar “toda la información relevante”.

“El concepto de negar la entrada a personas que probablemente dependerán de la asistencia gubernamental no es nuevo”, escribió Elizabeth Jacobs, directora de asuntos regulatorios del grupo, en una publicación de diciembre.

La propuesta federal también admite que estas modificaciones podrían provocar una pérdida de ingresos para economías estatales y locales, incluidos proveedores de salud como hospitales, supermercados, agricultores y arrendadores que participan en programas de vivienda financiados por el gobierno federal.

Un análisis de KFF estimó que la norma que impulsa el gobierno podría llevar a que entre 1,3 y 4 millones de personas abandonen Medicaid o el Programa de Seguro de Salud para Niños, incluidos hasta 1,8 millones de niños ciudadanos.

“Claramente se está usando para generar miedo y ansiedad”, dijo Benyamin Chao, gerente supervisor de políticas de salud y beneficios públicos del California Immigrant Policy Center. El funcionario calificó la iniciativa como parte de un “ataque a inmigrantes con residencia legal, a ciudadanos estadounidenses que son familiares, y a la comunidad en general”.

Es posible que el temor a la carga pública también haga que menos personas participen en iniciativas contra el hambre, como el Programa de Asistencia Nutricional Suplementaria, conocido en California como CalFresh. Mark Lowry, director del Banco de Alimentos del condado de Orange, dijo que esto — junto con las bajas relacionadas con la ley One Big Beautiful Bill Act — podría saturar los bancos de alimentos, ya que los programas federales de nutrición representan la mayor parte de la ayuda alimentaria.

“No hay forma de que el sistema de alimentos de emergencia tenga la capacidad ni los recursos para cubrir esas necesidades”, dijo.

Necesidades de atención médica

El temor a inscribirse en Medi-Cal no afecta a todos los inmigrantes. Juana Zaragoza dirige un programa en Oxnard que ayuda principalmente a trabajadores agrícolas indígenas de México a anotarse en Medi-Cal. Allí, la inscripción y reinscripción se han mantenido estables en los últimos meses. Ni ella ni las comunidades a las que atiende conocen mucho sobre la propuesta de carga pública, explicó.

A menudo, las preocupaciones se ven superadas por la necesidad inmediata de atención médica.

“Nos encontramos con muchas personas que están evaluando qué los beneficia ahora y qué los beneficiará después”, dijo. “Algunos solo quieren cubrir sus necesidades en el momento”.

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An Arm and a Leg: The Accidental Architect of America’s Drug Patent Problem

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 @danweissmann.bsky.social 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 Facebook, Instagram, LinkedIn, and Bluesky. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

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

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Read Wells’ “Urgent Care Clinics Move To Fill Abortion Care Gaps in Rural Areas.”

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Read Houghton’s “This Northern Cheyenne Doula Was About To Start Getting Paid — Then Medicaid Cuts Hit.”

KFF Health News contributor Michelle Andrews discussed farm bureau health plans on The Yonder Report on April 8.

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States Update Guardianship Laws To Keep Children of Immigrants Out of Foster Care

As family separations caused by immigration enforcement ramped up last year under President Donald Trump, I wondered what happens to the children whose parents are detained or deported. I found that some have been placed in foster care if they don’t have other family or friends to assume responsibility for them — but it’s not known how many.

The federal government doesn’t track what happens to children after their parents are detained or deported, and state data varies. Independent news reports are scarce and likely undercount the issue. But there’s evidence that in many states some of the children are being placed in foster care.

In Oregon, for example, there have been at least two cases in which children who were separated from their parents were placed into foster care by the state. Jake Sunderland, press secretary for the state Department of Human Services, said that before last fall, this “simply had never happened before.”

Separation from a parent can be deeply traumatic for children and lead to a broad range of health and psychological issues, including post-traumatic stress disorder. Some states have responded by updating their temporary guardianship laws to help immigrant parents better prepare care for their children in the event of their detention or deportation.

Lawmakers in New Jersey are considering a bill to allow parents to nominate standby, or temporary, guardians in the event of death, incapacity, or debilitation. The proposal adds separation caused by federal immigration enforcement as another allowable reason.

Nevada and California passed similar laws last year.

Yet some parents are hesitant to participate, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities. The hesitancy is out of fear that Immigration and Customs Enforcement agents could access their personal information and use it to target them for detention or deportation.

My colleagues Claudia Boyd-Barrett, Renuka Rayasam, and Amanda Seitz reported on a case in which ICE used data from the Department of Health and Human Services’ Office of Refugee Resettlement to detain parents under the impression they were reuniting with their children, highlighting the precarious situation for immigrant parents.

Additionally, ICE detention makes it difficult to reunite parents with their children if they’ve been placed in foster care because reunification often requires court-ordered programs, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles. Nominating a guardian is one way to ease immigrants’ feelings of helplessness when facing the threat of detention or deportation, Gonzalez-Perez said.

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As US Birth Rate Falls, Feds’ Response May Make Pregnancy More Dangerous

The number of babies born in the United States fell again last year.

According to new data from the Centers for Disease Control and Prevention, there were 3.6 million births in 2025, a 1% decline from 2024. The fertility rate dropped to 53.1 births per 1,000 women ages 15 to 44, down 23% since 2007.

The Trump administration has said it wants to reverse this trend. President Donald Trump has called for “a new baby boom,” and aides have solicited proposals from outside advocates and policy groups ranging from baby bonuses to expanded fertility planning. The administration is also proposing to reshape the federal government’s only dedicated family planning program: Title X.

For more than five decades, Title X has been geared — with bipartisan support — toward giving low-income women access to contraception, screening for sexually transmitted infections, and reproductive health care regardless of ability to pay. At its peak, the safety net program served more than 5 million patients a year. Six in 10 Title X clients have reported the program as their sole source of health care in a given year.

In early April, the Department of Health and Human Services invited nonprofit organizations to apply for Title X grants for fiscal year 2027, which begins in October. The 67-page Notice of Funding Opportunity included only one mention of contraception — describing it as overprescribed, associated with negative side effects, and part of a broader “overreliance on pharmaceutical and surgical treatments.”

The grant notification reshapes the program from its traditional public health intervention efforts to focus on fertility, family formation, and reproductive health conditions such as polycystic ovary syndrome, endometriosis, low testosterone, and erectile dysfunction.

While Title X will continue to help women “achieve healthy pregnancies,” the grant document does not explicitly reference preventing unintended pregnancies — a long-standing goal of the program.

Jessica Marcella, who oversaw the Title X program as a senior official in the Biden administration, said the new funding notice amounts to a wholesale redefinition of family planning.

“What we’re seeing is trying to use our nation’s family planning as a Trojan horse for an entirely different agenda,” Marcella said, noting that Trump has proposed eliminating Title X altogether.

Birth Rates and Fertility Trends

The administration is overhauling Title X in the context of declining birth rates. But researchers who study fertility trends say the decline is driven by forces that have little to do with contraception access and that restricting it is unlikely to produce more births.

The most important factors, according to demographer Alison Gemmill of UCLA, are timing-related. “Childbearing is increasingly delayed as part of a broader shift toward later adult milestones, including stable employment, leaving the parental home, and marriage,” she said.

Most American women, she said, still complete their childbearing years with an average of two children, suggesting a shift toward smaller families rather than an increase in childlessness.

“Having children has become more contingent and more planned,” she said.

Much of the decline since 2007 reflects women postponing births rather than forgoing them.

“The average number of babies women are having in their whole lives has not fallen. It’s still more than 2.0 for women aged 45,” said Philip Cohen, a professor of sociology at the University of Maryland.

Phillip Levine, an economist at Wellesley College, said the birth rate has declined due to shifts in how women approach work, leisure, and parenting. “Efforts to reverse those patterns would be more successful if they can make childbearing more desirable, not make it harder to prevent a pregnancy,” he said.

Asked about the role of contraception in reducing maternal mortality and how the new funding notice advances that goal, HHS press secretary Emily Hilliard said in a statement: “Applicants for the 2027 Title X funding cycle will be expected to align with the administration’s stated priorities in the released Notice of Funding Opportunity. HHS, under the leadership of Secretary Kennedy and President Trump, will continue to support policies that support life, family well-being, maternal health, and address the chronic disease epidemic. HHS remains focused on improving maternal outcomes and ensuring programs are administered consistent with applicable law.”

Marcella said the new funding notice is the product of two converging forces: the Make America Healthy Again movement, with its skepticism of conventional medicine and emphasis on lifestyle and behavioral interventions, and a pronatalist agenda that seeks to boost birth rates by steering policy toward family formation.

The document’s language reflects both: It repeatedly invokes “optimal health” and “chronic disease” while sidelining the contraceptive services that have defined Title X for half a century.

Clare Coleman, president and CEO of the National Family Planning & Reproductive Health Association, which represents health professionals focused on family planning, said tying Title X to birth-rate goals replaces individual decision-making with a government objective. The program “is designed to facilitate access to family planning services, including services to achieve and prevent pregnancy,” she said.

Title X’s New Focus

The administration’s changes have been welcomed on the right.

Emma Waters, a senior policy analyst at the conservative Heritage Foundation, who has advocated for what she calls “restorative reproductive medicine,” said the new funding notice reflects overdue attention to neglected aspects of women’s health.

“I was particularly encouraged to see language that spoke to the delays in diagnosis for conditions like endometriosis, the need for women to practically understand how their cycle and fertility works, and to ensure that real root-cause was promoted through Title X,” Waters said.

She described the notice as an expansion, not a narrowing, of the program’s mission: “I see this iteration of Title X as the fulfillment of its purpose. The goal was never just ‘more contraception’ but a wholesale empowerment of women to govern their own fertility.”

Waters also argued that untreated reproductive health problems may contribute to lower birth rates.

“One of the interesting aspects of this debate, and one that is often overlooked, is the degree to which painful and unaddressed reproductive health problems may suppress or create ambivalence around a woman’s desire to have kids,” she said, pointing to endometriosis.

An estimated 5% to 10% of women of reproductive age have endometriosis, and of those, 30%-50% experience infertility. Scientifically speaking, the relationship is an association, not a proven cause. Women aren’t screened for endometriosis if they don’t have symptoms, and the condition may be more prevalent than is recognized. Researchers still do not fully understand why some women with endometriosis struggle to conceive while others do not, and treating the disease does not reliably restore fertility.

Infertility rates in the U.S., meanwhile, have not risen. An analysis of federal survey data found them essentially flat between 1995 and 2019, even as the national birth rate fell sharply — a divergence that points away from untreated reproductive disease as an explanation.

Meanwhile, in February, the American College of Obstetricians and Gynecologists issued new clinical guidelines enabling earlier diagnosis of endometriosis without surgery, a step toward addressing the delays Waters described. But the first-line treatment ACOG recommends is hormonal therapy, part of the same category of care the funding notice dismisses as part of an “overreliance on pharmaceutical and surgical treatments.” The effect, reproductive health experts say, is a contradiction: Title X is now prioritizing diagnosis of endometriosis while deemphasizing the drugs clinicians use to treat it.

Treatments that have been shown to improve fertility in women with endometriosis, such as laparoscopic surgery and in vitro fertilization, are not covered by Title X. When President Richard Nixon signed Title X into law in 1970, he described it as a way to expand access to family planning services — helping women determine the number and spacing of their children by making contraception and related preventive care more widely available, particularly for those who could not afford it. Medicaid, not Title X, is the primary government health insurance program covering health care for low-income women, but, like many commercial insurance plans, it does not cover IVF.

Many of the conditions prioritized in the funding notice deserve attention, said Liz Romer, a former chief clinical adviser for the HHS Office of Population Affairs who helped write updated guidelines for the family planning program. But they fall outside the scope of what Title X can realistically provide.

“There’s not even enough funding to support the core premise of contraception,” Romer said. “And so, if you want to expand Title X funding, you can expand the scope, but you can’t move away from the foundation.”

The emergence of an anticontraception ideology within federal health policy is striking, she said, given how broadly the public supports access to birth control. Eight in 10 women of childbearing age surveyed by KFF in 2024 reported having used some form of contraception in the previous 12 months.

Laura Lindberg, director of the Concentration in Sexual and Reproductive Health, Rights and Justice at Rutgers School of Public Health, said, “If contraception is sidelined in Title X, it won’t just change language on paper but will show up as fewer options and more barriers for patients.” Funding could move away from providers who offer a full range of contraceptive care, she added, “toward organizations that are ideologically opposed to contraception and don’t deliver the same standard of health care services.”

The Stakes Are High

The United States already has one of the highest maternal mortality rates among wealthy nations — 17.9 deaths per 100,000 live births as of 2024. According to the CDC, 4 in 5 pregnancy-related deaths in the U.S. may be preventable. Medical research shows that pregnancy carries substantially higher risks of blood clots, stroke, and cardiovascular complications than hormonal contraception.

And since the Supreme Court’s Dobbs decision in 2022, which overturned the constitutional right to abortion established by Roe v. Wade, access to abortion has been significantly curtailed across much of the country. While national abortion numbers have risen, driven largely by telehealth and interstate access, research shows births have increased in states with bans, with an estimated 32,000 additional births annually, disproportionately among young women and women of color.

Dr. Christine Dehlendorf, who directs the Person-Centered Reproductive Health Program at the University of California-San Francisco, said “there is absolutely no evidence for any positive outcome of restricting access to contraception.” Restrictions would instead increase demand for abortion care and make it harder for women to prevent high-risk pregnancies.

Since Trump returned to office, more than a dozen Title X grantees have had their grants frozen, forcing some health centers to stop delivering services, lay off staff, or close. During the first Trump administration, regulatory changes led to a decline in Title X participation from more than 4 million patients to 1.5 million. The program grew slowly under the Biden administration, reaching about 3 million clients, before the current round of disruptions began.

The second Trump administration’s overhaul of the program, Marcella said, “directly undermines the public health intent of our nation’s family planning program and will potentially exclude millions of individuals from getting the care they have relied on for decades. It’s bad policy.”

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