Category: Rehab News

ATLANTA — Lloyd Mills was tired of being stuck in a small, drab hospital room. On a rainy mid-September morning, a small TV attached to a mostly blank white wall played silently. There was nothing in the space to cheer it up — no cards, no flowers.

In February, the 32-year-old with autism, cerebral palsy, and kidney disease was brought to Grady Memorial Hospital from the group home where he had been living because he was having auditory hallucinations and suicidal thoughts, he said.

“Being here is not helping me, mentally, physically, emotionally,” Mills said.

He wanted to return to a group home or some other community setting where he could receive the care he needs without being confined. It’s his legal right. But it took the state agency overseeing his care more than eight months to get that done — and that placement would be short-lived.

Nearly 15 years ago, the U.S. Department of Justice sued Georgia for unnecessarily segregating people with developmental disabilities and mental illness. The state settled the case and agreed to a massive overhaul of the services it offers to that population. Despite hundreds of millions of dollars in investments and some notable improvements, the state’s system of caring for people with developmental disabilities and mental illness still has holes. The gaps often leave people like Mills sequestered in institutional settings and without the proper community supports.

Advocates said those failures continue to violate the rights of Georgians who have been historically marginalized and put their health at risk. “It’s an emergency,” said Susan Walker Goico, director of Atlanta Legal Aid Society’s Disability Integration Project. “Anytime somebody has to live in a segregated setting when they don’t want to, it’s terrible.”

The Americans with Disabilities Act, as clarified in a 1999 U.S. Supreme Court decision, says Mills and other people with disabilities have been legally entitled to receive care at home and in other community settings instead of being unnecessarily confined to places like hospitals and nursing homes.

That decision in Olmstead v. L.C. became the foundation for the lawsuit the Department of Justice levied against Georgia in 2010 that sought to force the state to fix its system.

Later that year, state officials agreed to stop putting people in state hospitals solely because they have developmental disabilities. They also agreed to use Medicaid to pay for people to receive care in the community, and to establish crisis response and housing services for those with mental illness.

The state agreed to make the fixes within five years. Nearly a decade and a half later, it’s still not finished.

Even critics acknowledge Georgia has made considerable improvements in the services it provides for people with developmental disabilities and mental illness. Since the start of the settlement, the state has invested nearly $521 million in community services. And, in late September, a federal judge released the state from many parts of its Olmstead settlement.

However, the DOJ, patient advocates, and even state officials acknowledge more work remains. They say there are many reasons it’s taking so long: the scale of the undertaking, loss of momentum over time, a workforce shortage that has limited appropriate community placements, and a lack of political will.

“The longer it continues, the more you sort of say, ‘Are we serious about solving this problem?’” said Geron Gadd, a senior attorney with the National Health Law Program.

The main challenges won’t be easy to solve without appropriate attention, investments, and commitment from lawmakers, advocates said. In a recent court filing, the state admitted it needs to remove more people with developmental disabilities from psychiatric hospitals, improve case management for people with mental illness, and provide more housing with mental health supports.

That final goal is the “bedrock” of Georgia’s mental health and developmental disability system, Goico said. “You have to have a place to live in order to get your services and to stay out of institutions.”

But people with developmental disabilities and mental illness regularly can’t find appropriate community placements, so they cycle in and out of hospitals and nursing homes, Goico and other observers noted.

In 2010, Georgia launched a housing voucher program for people with mental illness who are chronically homeless, incarcerated, or continually in and out of emergency rooms.

The state agreed to create the capacity to offer vouchers to 9,000 people by July 2015. Currently, only about 2,300 are in the program. Even so, state lawmakers declined to fund additional waivers in next year’s budget, saying they were waiting for an update on Georgia’s compliance with the DOJ settlement.

A legal settlement may dictate that states do certain things, but “the state legislature has to still vote to allocate funds,” said David Goldfarb, former director of long-term supports and services policy at the Arc of the United States, a disability rights organization.

The settlement has resulted in a huge transformation of Georgia’s service system, even though “it’s taking them quite a time to get there,” said Jennifer Mathis, a deputy assistant attorney general with the DOJ’s civil rights division.

For people with developmental disabilities, like Mills, that prolonged arrival means more time confined to hospitals and nursing homes.

Mills said he has had dozens of hospital stays, though none as long as his eight-month stint. “Sometimes it would go from two weeks to a month,” he said in September. “It’s stressful.”

Kevin Tanner, head of Georgia’s Department of Behavioral Health and Developmental Disabilities, noted that the number of people stuck in hospitals had been as high as 30 a day. It’s “down to the teens now,” he said, due in part to the recent opening of two homes for people with developmental disabilities in crisis, with eight beds to serve people statewide.

“No system’s perfect,” Tanner said.

Other states have struggled to achieve compliance. Virginia and North Carolina have been under similar federal oversight since 2012.

But some states have shown it’s possible to make fixes. Delaware entered an Olmstead settlement with the DOJ in 2011 and exited federal oversight five years later. Oregon settled a case in 2015 and achieved compliance in 2022.

In Georgia, a shortage of housing for people with developmental disabilities and mental illness has been exacerbated by the shuttering of home and community service providers in recent years, said Lisa Reisman, owner of Complete Care at Home, which offers home medical care to older adults and people with disabilities.

Many service providers blamed the shortage of home and community services on Georgia’s low Medicaid reimbursement rates, which have made it hard for providers to keep workers. Years of low rates “decimated the infrastructure,” said Ryan Whitmire, president of Developmental Disabilities Ministries of Georgia.

Reisman said she has had to turn down placement requests from the state because she couldn’t accommodate them. In those situations, she said, a state official said service providers would sometimes drop off clients at ERs because they “were out of money and they didn’t know where to put them.”

Service providers, including Whitmire, said nurses and other caregivers often leave for higher-paying jobs in fast food or retail.

This year, state lawmakers appropriated more than $106 million to increase Medicaid rates for mental health and developmental disability service providers. Some of those rates hadn’t been raised since 2008.

State lawmakers also recently passed a bill that would require a study every four years of rates it pays providers — though it would still be up to lawmakers to increase payments.

Not only was Lloyd Mills’ extended time in the hospital hard mentally and physically, it also made him lose his Medicaid coverage, said his representatives from the Georgia Advocacy Office, a nonprofit that represents people with disabilities.

Because he was in a hospital, he was unable to spend his monthly Supplemental Security Income payments, which accumulated until he had too much money to keep his health coverage.

In late October, eight months after his hospital stay began, the state moved him to a group home in Macon, about 85 miles southeast of Atlanta. In the days before his move, Mills said he was ready to start his next chapter.

“I’m just ready to live my life, and I don’t plan on ever coming back here again,” he said.

But his stay was short. In mid-November, after just a few weeks of living at the group home, Mills ended up back in a hospital. His advocates worry he won’t be heading to a community placement anytime soon.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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President-elect Donald Trump’s choice to run the sprawling government agency that administers Medicare, Medicaid, and the Affordable Care Act marketplace — celebrity doctor Mehmet Oz — recently held broad investments in health care, tech, and food companies that would pose significant conflicts of interest.

Oz’s holdings, some shared with family, included a stake in UnitedHealth Group worth as much as $600,000, as well as shares of pharmaceutical firms and tech companies with business in the health care sector, such as Amazon. Collectively, Oz’s investments total tens of millions of dollars, according to financial disclosures he filed during his failed 2022 run for a Pennsylvania U.S. Senate seat.

Trump said Tuesday he would nominate Oz as administrator of the Centers for Medicare & Medicaid Services. The agency’s scope is huge: CMS oversees coverage for more than 160 million Americans, nearly half the population. Medicare alone accounts for approximately $1 trillion in annual spending, with over 67 million enrollees.

UnitedHealth Group is one of the largest health care companies in the nation and arguably the most important business partner of CMS, through which it is the leading provider of commercial health plans available to Medicare beneficiaries.

UnitedHealth also offers managed-care plans under Medicaid, the joint state-federal program for low-income people, and sells plans on government-run marketplaces set up via the Affordable Care Act. Oz also had smaller stakes in CVS Health, which now includes the insurer Aetna, and in the insurer Cigna.

It’s not clear if Oz, a heart surgeon by training, still holds investments in health care companies, or if he would divest his shares or otherwise seek to mitigate conflicts of interest should he be confirmed by the Senate. Reached by phone on Wednesday, he said he was in a Zoom meeting and declined to comment. An assistant did not reply to an email message with detailed questions.

“It’s obvious that over the years he’s cultivated an interest in the pharmaceutical industry and the insurance industry,” said Peter Lurie, president of the Center for Science in the Public Interest, a watchdog group. “That raises a question of whether he can be trusted to act on behalf of the American people.” (The publisher of KFF Health News, David Rousseau, is on the CSPI board.)

Oz used his TikTok page on multiple occasions in November to praise Trump and Robert F. Kennedy Jr., including their efforts to take on the “illness-industrial complex,” and he slammed “so-called experts like the big medical societies” for dishing out what he called bad nutritional advice. Oz’s positions on health policy have been chameleonic; in 2010, he cut an ad urging Californians to sign up for insurance under President Barack Obama’s Affordable Care Act, telling viewers they had a “historic opportunity.”

Oz’s 2022 financial disclosures show that the television star invested a substantial part of his wealth in health care and food firms. Were he confirmed to run CMS, his job would involve interacting with giants of the industry that have contributed to his wealth.

Given the breadth of his investments, it would be difficult for Oz to recuse himself from matters affecting his assets, if he still holds them. “He could spend his time in a rocking chair” if that happened, Lurie said.

In the past, nominees for government positions with similar potential conflicts of interest have chosen to sell the assets or otherwise divest themselves. For instance, Treasury Secretary Janet Yellen and Attorney General Merrick Garland agreed to divest their holdings in relevant, publicly traded companies when they joined the Biden administration.

Trump, however, declined in his first term to relinquish control of his own companies and other assets while in office, and he isn’t expected to do so in his second term. He has not publicly indicated concern about his subordinates’ financial holdings.

CMS’ main job is to administer Medicare. About half of new enrollees now choose Medicare Advantage, in which commercial insurers provide their health coverage, instead of the traditional, government-run program, according to an analysis from KFF, a health information nonprofit that includes KFF Health News.

Proponents of Medicare Advantage say the private plans offer more compelling services than the government and better manage the costs of care. Critics note that Medicare Advantage plans have a long history of costing taxpayers more than the traditional program.

UnitedHealth, CVS, and Cigna are all substantial players in the Medicare Advantage market. It’s not always a good relationship with the government. The Department of Justice filed a 2017 complaint against UnitedHealth alleging the company used false information to inflate charges to the government. The case is ongoing.

Oz is an enthusiastic proponent of Medicare Advantage. In 2020, he proposed offering Medicare Advantage to all; during his Senate run, he offered a more general pledge to expand those plans. After Trump announced Oz’s nomination for CMS, Jeffrey Singer, a senior fellow at the libertarian-leaning Cato Institute, said he was “uncertain about Dr. Oz’s familiarity with health care financing and economics.”

Singer said Oz’s Medicare Advantage proposal could require large new taxes — perhaps a 20% payroll tax — to implement.

Oz has gotten a mixed reception from elsewhere in Washington. Pennsylvania Sen. John Fetterman, the Democrat who defeated Oz in 2022, signaled he’d potentially support his appointment to CMS. “If Dr. Oz is about protecting and preserving Medicare and Medicaid, I’m voting for the dude,” he said on the social platform X.

Oz’s investments in companies doing business with the federal government don’t end with big insurers. He and his family also hold hospital stocks, according to his 2022 disclosure, as well as a stake in Amazon worth as much as nearly $2.4 million. (Candidates for federal office are required to disclose a broad range of values for their holdings, not a specific figure.)

Amazon operates an internet pharmacy, and the company announced in June that its subscription service is available to Medicare enrollees. It also owns a primary care service, One Medical, that accepts Medicare and “select” Medicare Advantage plans.

Oz was also directly invested in several large pharmaceutical companies and, through investments in venture capital funds, indirectly invested in other biotech and vaccine firms. Big Pharma has been a frequent target of criticism and sometimes conspiracy theories from Trump and his allies. Kennedy, whom Trump has said he’ll nominate to be Health and Human Services secretary, is a longtime anti-vaccine activist.

During the Biden administration, Congress gave Medicare authority to negotiate with drug companies over their prices. CMS initially selected 10 drugs. Those drugs collectively accounted for $50.5 billion in spending between June 1, 2022, and May 31, 2023, under Medicare’s Part D prescription drug benefit.

At least four of those 10 medications are manufactured by companies in which Oz held stock, worth as much as about $50,000.

Oz may gain or lose financially from other Trump administration proposals.

For example, as of 2022, Oz held investments worth as much as $6 million in fertility treatment providers. To counter fears that politicians who oppose abortion would ban in vitro fertilization, Trump floated during his campaign making in vitro fertilization treatment free. It’s unclear whether the government would pay for the services.

In his TikTok videos from earlier in November, Oz echoed attacks on the food industry by Kennedy and other figures in his “Make America Healthy Again” movement. They blame processed foods and underregulation of the industry for the poor health of many Americans, concerns shared by many Democrats and more mainstream experts.

But in 2022, Oz owned stakes worth as much as $80,000 in Domino’s Pizza, Pepsi, and US Foods, as well as more substantial investments in other parts of the food chain, including cattle; Oz reported investments worth as much as $5.5 million in a farm and livestock, as well as a stake in a dairy-free milk startup. He was also indirectly invested in the restaurant chain Epic Burger.

One of his largest investments was in the Pennsylvania-based convenience store chain Wawa, which sells fast food and all manner of ultra-processed snacks. Oz and his wife reported a stake in the company, beloved by many Pennsylvanians, worth as much as $30 million.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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President-elect Donald Trump is continuing to staff his incoming administration, and his picks so far for key health policy positions are particularly polarizing. He said he’ll nominate prominent vaccine skeptic Robert F. Kennedy Jr. to head the Department of Health and Human Services and Mehmet Oz — a controversial heart surgeon, former Senate candidate, and TV host — to run the Centers for Medicare & Medicaid Services, which oversees coverage for more than 160 million Americans.

Meanwhile, on Capitol Hill, the lame-duck Congress has just weeks to finish its work for the year, including health priorities such as pandemic preparedness, while the incoming Congress starts to lay out plans for changes to Medicaid and the Affordable Care Act.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs Zhang of Stat, Riley Griffin of Bloomberg News, and Sandhya Raman of CQ Roll Call.

Among the takeaways from this week’s episode:

• Trump has named Kennedy as his choice for HHS secretary and Oz as head of CMS. Their appointments could create interesting tensions for Trump’s second administration. Kennedy’s crusade against ultra-processed foods could translate into more regulations in an otherwise regulation-averse administration, and Oz’s embrace of Medicare Advantage — a program that has drawn attention for costing more than traditional Medicare — could run afoul of efforts to slash government spending.
• There’s another facet of the Kennedy pick that could cause hiccups for the confirmation process: He supports abortion rights and is set to lead an agency that many in the GOP hope could play a major role in restricting abortion access nationwide. Could that detail prove problematic for Republican senators considering his nomination? Time will tell.
• With Trump transition officials vowing to clean house, especially among public health agencies, it is worth noting the broad authority granted to the HHS secretary. Congress regularly passes legislation that leaves the details to the agencies. The question, though, is how state health officials will interpret federal guidance — as considerable power on matters like vaccination policy is also left to the states.
• In the halls of Congress, congressional committees are poised for a shake-up. Many members of key health committees, such as the Energy and Commerce Committee in the House of Representatives and the Finance Committee in the Senate, are not returning. That personnel drain has broader implications: Those departing lawmakers take with them a lot of health policy knowledge.

Also this week, Rovner interviews Sarah Varney, who has been covering a trial in Idaho challenging the lack of medical exceptions in that state’s abortion ban.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: ProPublica’s “How Lincare Became a Multibillion-Dollar Medicare Scofflaw,” by Peter Elkind.  

Sandhya Raman: ProPublica’s “How UnitedHealth’s Playbook for Limiting Mental Health Coverage Puts Countless Americans’ Treatment at Risk,” by Annie Waldman.  

Riley Griffin: The New York Times’ “A.I. Chatbots Defeated Doctors at Diagnosing Illness,” by Gina Kolata.  

Rachel Cohrs Zhang: CNBC’s “Dental Supply Stock Surges on RFK’s Anti-Fluoride Stance, Activist Involvement,” by Alex Harring.  

Also mentioned in this week’s podcast:

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This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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Nearly a year after the Biden administration gave Florida the green light to become the first state to import lower-cost prescription drugs from Canada — a longtime goal of politicians across the political spectrum, including President-elect Donald Trump — the program has yet to begin.

Florida Gov. Ron DeSantis hailed the FDA’s approval of his plan in January, calling it a victory over the drug industry, which opposes importation on the grounds that it would lead to a surge in counterfeit medications.

A Florida health official familiar with the importation program told KFF Health News there was no planned date yet for the state to begin importing drugs. The official asked not to be identified because they weren’t authorized to speak publicly about the program.

Florida applied to create an importation program in November 2020, just months after the Trump administration gave states the option. DeSantis, a Republican, complained publicly for years about the pace of the federal approval process under the Biden administration and in 2022 filed suit against the FDA for what he called a “reckless delay.”

Trump touted his administration’s move to bring medicines over the border in a preelection interview published last month by AARP, the advocacy group for older Americans, which supports allowing Americans to buy drugs from Canada. He vowed to “continue my efforts to protect Americans from unaffordable drug prices” in a second term.

It’s not clear whether his second administration will or can do more to help Florida and other states set up programs, because it’s ultimately up to the states to act. Colorado is the only other state that has an importation plan pending with the FDA.

DeSantis administration officials have refused for months to answer questions from KFF Health News about the program. Alecia Collins, deputy chief of staff for the Florida Agency for Health Care Administration, said in October that officials were traveling and unavailable. In mid-November, she said she still had no answers.

DeSantis press secretary Jeremy Redfern said he had been “slammed” since the first week of November and could not answer questions.

FDA spokesperson Cherie Duvall-Jones said she could not answer whether Florida had submitted documents the agency requires before the state can start importing medicines. She referred all questions to the state.

Drug companies typically sell medications for far less in Canada than in the United States, as a result of Canadian government price controls. But because of safety and efficacy concerns, federal law prohibits consumers from buying drugs from outside U.S. borders except in rare cases.

Politicians ranging from conservatives such as DeSantis to liberals such as Sen. Bernie Sanders of Vermont have long pushed for importing lower-cost prescription drugs from Canada.

In 2000, Congress passed a law allowing states to import prescription drugs from north of the border, with the caveat that it could go forward only if the secretary of the Department of Health and Human Services affirmed it was safe. That didn’t happen until 2020, when Trump’s HHS secretary, Alex Azar, made such a declaration.

Since 2022, Azar has been chairman of the board at LifeScience Logistics, a Dallas-based company that Florida is paying millions of dollars to set up its drug importation program, including warehousing its medicines.

Azar on Nov. 13 refused to answer questions from KFF Health News about drug importation, saying he wasn’t authorized to speak on the matter.

Florida’s program would not directly assist consumers at the pharmacy. It’s instead aimed at lowering costs for the state Medicaid program and for the corrections and health departments.

Matthew Baxter, a senior director at Ontario-based Methapharm Specialty Pharmaceuticals, which has contracted with LifeScience to export drugs, would not say whether Methapharm has sent any medicines over the border.

The pharmaceutical industry and the Canadian government oppose U.S. drug importation. Drug companies say importation would increase the risk of counterfeit drugs appearing on U.S. pharmacy shelves, while the government in Ottawa has warned it won’t allow medicines to be exported if Canadians could experience shortages as a result.

Florida’s predicted savings would also be relatively minor. DeSantis estimated the program would save state agencies up to $180 million in its first year. Florida’s annual Medicaid budget tops $30 billion.

Florida identified 14 drugs, including for cancer and AIDS, that it would attempt to import from Canada for its state agencies.

Camm Epstein, a health policy analyst in Saratoga Springs, New York, said drug importation is a seemingly simple concept that resonates with the public, which is why DeSantis and others have turned to the idea as a response to rising drug prices. “It riles up the crowd,” he said. “Who doesn’t want to pay lower drug costs?”

But bringing drugs over the border is complicated because of the FDA’s many requirements, including finding companies to work with — a Canadian exporter and a U.S. importer — and following a process that ensures the drugs are authentic, Epstein said.

“This was, at best, a boondoggle,” he said.

Florida has spent tens of millions of dollars to stand up its drug importation program. The state has already paid LifeScience Logistics $50 million to set up a warehouse to store the medicines. DeSantis noted the costs in his 2022 lawsuit against the FDA.

“Plaintiffs have paid their retained importer and distributor over $24 million thus far — and increasing at the rate of $1.2 million every month — even though not a single prescription pill has been imported, relabeled, or distributed, solely because of the FDA’s idleness,” the state said in its suit.

Florida’s delay may be due to operational challenges, Epstein said. “Predictably, even if they turned on the spigot there would be no flow, because Canada was not going to permit for the supply,” he said.

Colorado and Florida are among at least nine states that have passed laws allowing for Canadian drug importation. Colorado’s 2022 application to the FDA is still pending. In December 2023, Colorado officials released a report noting the state was unable to find a drugmaker willing to sell it medicines from Canada.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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Casi un año después que la administración Biden diera luz verde a Florida para convertirse en el primer estado en importar medicamentos recetados más baratos de Canadá —un objetivo de muchos políticos de todas las tendencias, incluido el presidente electo Donald Trump— el programa aún no ha comenzado.

El gobernador de Florida, Ron DeSantis, celebró en enero que la Administración de Alimentos y Medicamentos (FDA) aprobara su plan, calificándolo de victoria sobre la industria farmacéutica, que se opone a la importación alegando que provocaría un aumento de medicamentos falsificados.

Un funcionario de salud de Florida, familiarizado con el programa de importación, dijo a KFF Health News que aún no había fecha prevista para que el estado comenzara a importar medicamentos. El funcionario pidió no ser identificado porque no estaba autorizado a hablar públicamente sobre este tema.

Florida solicitó crear un programa de importación en noviembre de 2020, pocos meses después que la administración Trump concediera esta opción a los estados. El republicano DeSantis se había quejado públicamente sobre el ritmo del proceso de aprobación federal bajo la administración Biden y en 2022 presentó una demanda contra la FDA por lo que llamó un “retraso imprudente”

Trump promocionó la medida de su administración para pasar medicamentos por la frontera en una entrevista previa a la elección publicada en octubre por AARP, la organización nacional que aboga por los derechos de los adultos mayores y que apoya que se permita a los estadounidenses comprar medicamentos en Canadá. En la entrevista, prometió “continuar mis esfuerzos para proteger a los estadounidenses de los precios inasequibles de los medicamentos” en un segundo mandato.

No está claro si su segunda administración hará o podrá hacer más para ayudar a Florida y a otros estados a establecer programas, porque en última instancia corresponde a los estados actuar. Colorado es el único otro estado que tiene un plan de importación pendiente con la FDA.

Funcionarios de la administración DeSantis se han negado durante meses a responder a las preguntas de KFF Health News sobre el programa. Alecia Collins, jefa de personal de la Agencia de Florida para la Administración del Cuidado de Salud, dijo en octubre que los funcionarios no estaban disponibles porque estaban de viaje. A mediados de noviembre, dijo que todavía no tenía respuestas.

El secretario de prensa de DeSantis, Jeremy Redfern, señaló que había sido “objeto de críticas” desde la primera semana de noviembre y no podía responder a las preguntas.

Cherie Duvall-Jones, vocera de la FDA, expresó que no podía responder a la pregunta sobre si Florida había presentado los documentos que la agencia exige antes de que el estado pueda empezar a importar medicamentos. Y remitió todas las preguntas al estado.

Las farmacéuticas suelen vender los medicamentos mucho más baratos en Canadá que en Estados Unidos por los controles de precios del gobierno canadiense. Pero por motivos de seguridad y eficacia, la ley federal prohíbe a los consumidores comprar medicamentos fuera de las fronteras de Estados Unidos, salvo en contadas ocasiones.

Políticos que van desde conservadores como DeSantis a liberales como el senador Bernie Sanders, de Vermont, llevan mucho tiempo presionando para que se importen medicamentos recetados de menor costo desde Canadá.

En el año 2000, el Congreso aprobó una ley que permite a los estados importar medicamentos recetados al norte de la frontera, con la advertencia de que sólo podría seguir adelante si el secretario del Departamento de Salud y Servicios Humanos (HHS) afirmaba que era seguro. Eso no ocurrió hasta 2020, cuando el secretario del HHS de Trump, Alex Azar, hizo tal declaración.

Desde 2022, Azar ha sido presidente de la junta directiva de LifeScience Logistics, una empresa con sede en Dallas a la que Florida está pagando millones de dólares para establecer su programa de importación de medicamentos, incluido su almacenamiento.

El 13 de noviembre, Azar se negó a responder a las preguntas de KFF Health News sobre la importación de medicamentos, diciendo que no estaba autorizado a hablar sobre el asunto.

El programa de Florida no ayudaría directamente a los consumidores en la farmacia. Su objetivo es reducir los costos del programa estatal de Medicaid y de los departamentos de salud y prisiones.

Matthew Baxter, director de Methapharm Specialty Pharmaceuticals, con sede en Ontario, que ha contratado a LifeScience para exportar medicamentos, no quiso decir si Methapharm ha enviado algún medicamento a través de la frontera.

La industria farmacéutica y el gobierno canadiense se oponen a la exportación de medicamentos a Estados Unidos. Las farmacéuticas afirman que aumentaría el riesgo de que aparezcan medicamentos falsificados en las estanterías de las farmacias estadounidenses, mientras que el Gobierno de Ottawa ha advertido de que no permitirá la exportación de medicamentos si, como consecuencia, los canadienses pudieran sufrir escasez.

El ahorro previsto en Florida también sería relativamente menor. DeSantis estimó que el programa ahorraría a las agencias estatales hasta $180 millones en su primer año. El presupuesto anual de Medicaid de Florida supera los $30,000 millones.

Florida identificó 14 medicamentos, entre ellos algunos para el cáncer y el sida, que intentaría importar de Canadá para sus agencias estatales.

Camm Epstein, analista de políticas de salud en Saratoga Springs, Nueva York, señaló que la importación de medicamentos es un concepto aparentemente simple que atrae la atención de los ciudadanos, razón por la cual DeSantis y otros han recurrido a la idea como respuesta al aumento de los precios de los medicamentos. “Es algo que agita a las masas”, dijo Epstein. “¿Quién no quiere pagar menos por las medicinas?”.

Pero pasar medicamentos por la frontera es complicado debido a los numerosos requisitos de la FDA, entre ellos encontrar empresas con las que trabajar —un exportador canadiense y un importador estadounidense— y seguir un proceso que garantice que los medicamentos sean auténticos, apuntó Epstein.

“Esto lo convirtió, en el mejor de los casos, en un despilfarro”, añadió.

Florida ha gastado decenas de millones de dólares para poner en marcha su programa de importación de medicamentos. El estado ya ha pagado a LifeScience Logistics $50 millones para establecer un depósito en donde guardar los fármacos. DeSantis señaló los costos en su demanda de 2022 contra la FDA.

“Los demandantes han pagado a su importador y distribuidor más de $24 millones hasta ahora —aumentando a razón de $1,2 millones cada mes— a pesar de que ni una sola píldora ha sido importada, reetiquetada o distribuida, debido a la desidia de la FDA”, expresó el estado en su demanda.

El retraso de Florida puede deberse a problemas operativos, según Epstein. “Previsiblemente, aunque abrieran el grifo no habría flujo, porque Canadá no iba a permitir el suministro”, dijo.

Colorado y Florida se encuentran entre los nueve estados que han aprobado leyes que permiten la importación de medicamentos canadienses. La solicitud de Colorado a la FDA, en 2022, sigue pendiente. En diciembre de 2023, las autoridades de Colorado publicaron un informe en el que señalaban que el estado era incapaz de encontrar un fabricante de fármacos dispuesto a venderle medicamentos procedentes de Canadá.

Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo. 

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President-elect Donald Trump’s return to the White House could embolden Republicans who want to weaken or repeal the Affordable Care Act, but implementing such sweeping changes would still require overcoming procedural and political hurdles.

Trump, long an ACA opponent, expressed interest during the campaign in retooling the health law. In addition, some high-ranking Republican lawmakers — who will now have control over both the House and the Senate — have said revamping the landmark 2010 legislation known as Obamacare would be a priority. They say the law is too expensive and represents government overreach.

The governing trifecta sets the stage for potentially seismic changes that could curtail the law’s Medicaid expansion, raise the uninsured rate, weaken patient protections, and increase premium costs for millions of people.

“The Republican plans — they don’t say they are going to repeal the ACA, but their collection of policies could amount to the same thing or worse,” said Sarah Lueck, vice president for health policy at the Center on Budget and Policy Priorities, a research and policy institute. “It could happen through legislation and regulation. We’re on alert for anything and everything. It could take many forms.”

Congressional Republicans have held dozens of votes over the years to try to repeal the law. They were unable to get it done in 2017 after Trump became president, even though they held both chambers and the White House, in large part because some GOP lawmakers wouldn’t support legislation they said would cause such a marked increase in the uninsured rate.

Similar opposition to revamping the law could emerge again, especially because polls show the ACA’s protections are popular.

While neither Trump nor his GOP allies have elaborated on what they would change, House Speaker Mike Johnson said last month that the ACA needs “massive reform” and would be on the party’s agenda should Trump win.

Congress could theoretically change the ACA without a single Democratic vote, using a process known as “reconciliation.” The narrow margins by which Republicans control the House and Senate mean just a handful of “no” votes could sink that effort, though.

Many of the more ambitious goals would require Congress. Some conservatives have called for changing the funding formula for Medicaid, a federal-state government health insurance program for low-income and disabled people. The idea would be to use budget reconciliation to gain lawmakers’ approval to reduce the share paid by the federal government for the expansion population. The group that would be most affected is made up largely of higher-income adults and adults who don’t have children rather than “traditional” Medicaid beneficiaries such as pregnant women, children, and people with disabilities.

A conservative idea that would let individuals use ACA subsidies for plans on the exchange that don’t comply with the health law would likely require Congress. That could cause healthier people to use the subsidies to buy cheaper and skimpier plans, raising premiums for older and sicker consumers who need more comprehensive coverage.

“It’s similar to an ACA repeal plan,” said Cynthia Cox, a vice president and the director of the Affordable Care Act program at KFF, a health information nonprofit that includes KFF Health News, the publisher of California Healthline. “It’s repeal with a different name.”

Congress would likely be needed to enact a proposal to shift a portion of consumers’ ACA subsidies to health savings accounts to pay for eligible medical expenses.

Trump could also opt to bypass Congress. He did so during his previous tenure, when the Department of Health and Human Services invited states to apply for waivers to change the way their Medicaid programs were paid for — capping federal funds in exchange for more state flexibility in running the program. Waivers have been popular among both blue and red states for making other changes to Medicaid.

“Trump will do whatever he thinks he can get away with,” said Chris Edelson, an assistant professor of government at American University. “If he wants to do something, he’ll just do it.”

Republicans have another option to weaken the ACA: They can simply do nothing. Temporary, enhanced subsidies that reduce premium costs — and contributed to the nation’s lowest uninsured rate on record — are set to expire at the end of next year without congressional action. Premiums would then double or more, on average, for subsidized consumers in 12 states who enrolled using the federal ACA exchange, according to data from KFF.

That would mean fewer people could afford coverage on the ACA exchanges. And while the number of people covered by employer plans would likely increase, an additional 1.7 million uninsured individuals are projected each year from 2024 to 2033, according to federal estimates.

Many of the states that would be most affected, including Texas and Florida, are represented by Republicans in Congress, which could give some lawmakers pause about letting the subsidies lapse.

The Trump administration could opt to stop defending the law against suits seeking to topple parts of it. One of the most notable cases challenges the ACA requirement that insurers cover some preventive services, such as cancer screenings and alcohol use counseling, at no cost. About 150 million people now benefit from the coverage requirement.

If the Department of Justice were to withdraw its petition after Trump takes office, the plaintiffs would not have to observe the coverage requirement — which could inspire similar challenges, with broader implications. A recent Supreme Court ruling left the door open to legal challenges by other employers and insurers seeking the same relief, said Zachary Baron, a director of Georgetown University’s Center for Health Policy and the Law.

In the meantime, Trump could initiate changes from his first day in the Oval Office through executive orders, which are directives that have the force of law.

“The early executive orders will give us a sense of policies that the administration plans to pursue,” said Allison Orris, a senior fellow at the Center on Budget and Policy Priorities. “Early signaling through executive orders will send a message about what guidance, regulations, and policy could follow.”

In fact, Trump relied heavily on these orders during his previous term: An October 2017 order directed federal agencies to begin modifying the ACA and ultimately increased consumer access to health plans that didn’t comply with the law. He could issue similar orders early on in his new term, using them to start the process of compelling changes to the law, such as stepped-up oversight of potential fraud.

The administration could early on take other steps that work against the ACA, such as curtailing federal funding for outreach and help signing up for ACA plans. Both actions depressed enrollment during the previous Trump administration.

Trump could also use regulations to implement other conservative proposals, such as increasing access to health insurance plans that don’t comply with ACA consumer protections.

The Biden administration walked back Trump’s efforts to expand what are often known as short-term health plans, disparaging the plans as “junk” insurance because they may not cover certain benefits and can deny coverage to those with a preexisting health condition.

The Trump administration is expected to use regulation to reverse Biden’s reversal, allowing consumers to keep and renew the plans for much longer.

But drafting regulations has become far more complicated following a Supreme Court ruling saying federal courts no longer have to defer to federal agencies facing a legal challenge to their authority. In its wake, any rules from a Trump-era HHS could draw more efforts to block them in the courts.

Some people with ACA plans say they’re concerned. Dylan Reed, a 43-year-old small-business owner from Loveland, Colorado, remembers the days before the ACA — and doesn’t want to go back to a time when insurance was hard to get and afford.

In addition to attention-deficit/hyperactivity disorder and anxiety, he has scleroderma, an autoimmune disease associated with joint pain and numbness in the extremities. Even with his ACA plan, he estimates, he pays about $1,000 a month for medications alone.

He worries that without the protections of the ACA it will be hard to find coverage with his preexisting conditions.

“It’s definitely a terrifying thought,” Reed said. “I would probably survive. I would just be in a lot of pain.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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GLENWOOD, Iowa — Hundreds of people who were separated from society because they had disabilities are buried in a nondescript field at the former state institution here.

Disability rights advocates hope Iowa will honor them by preventing the kind of neglect that has plagued similar cemeteries at other shuttered facilities around the U.S.

The southwest Iowa institution, called the Glenwood Resource Center, was closed this summer in the wake of allegations of poor care. The last of its living residents were moved elsewhere in June. But the remains of about 1,300 people will stay where they were buried on the grounds.

The graveyard, which dates to the 1800s, covers several acres of sloping ground near the campus’s brick buildings. A 6-foot-tall, weathered-concrete cross stands on the hillside, providing the most visible clue to the field’s purpose.

On a recent afternoon, dried grass clippings obscured row after row of small stone grave markers set flat in the ground. Most of the stones are engraved with only a first initial, a last name, and a number.

“If somebody who’s never been to Glenwood drove by, they wouldn’t even know there was a cemetery there,” said Brady Werger, a former resident of the facility.

During more than a century of operation, the institution housed thousands of people with intellectual disabilities. Its population declined as society turned away from the practice of sequestering people with disabilities and mental illness in large facilities for decades at a time. The cemetery is filled with residents who died and weren’t returned to their hometowns for burial with their families.

State and local leaders are working out arrangements to maintain the cemetery and the rest of the 380-acre campus. Local officials, who are expected to take control of the grounds next June, say they’ll need extensive state support for upkeep and redevelopment, especially with the town of about 5,000 people reeling from the loss of jobs at the institution.

Hundreds of such places were constructed throughout the U.S. starting in the 1800s. Some, like the one in Glenwood, served people with disabilities, such as those caused by autism or seizure disorders. Others housed people with mental illness.

Most of the facilities were built in rural areas, which were seen as providing a wholesome environment.

States began shrinking or closing these institutions more than 50 years ago. The shifts were a response to complaints about people being removed from their communities and subjected to inhumane conditions, including the use of isolation and restraints. In the past decade, Iowa has closed two of its four mental hospitals and one of its two state institutions for people with intellectual disabilities.

After closures in some other states, institutions’ cemeteries were abandoned and became overgrown with weeds and brush. The neglect drew protests and sparked efforts to respectfully memorialize people who lived and died at the facilities.

“At some level, the restoration of institutions’ cemeteries is about the restoration of humanity,” said Pat Deegan, a Massachusetts mental health advocate who works on the issue nationally. Deegan, who was diagnosed with schizophrenia as a teenager, sees the neglected graveyards as symbolic of how people with disabilities or mental illness can feel as if their individual identities are buried beneath the labels of their conditions.

Deegan, 70, helped lead efforts to rehabilitate a pair of overgrown cemeteries at the Danvers State Hospital near Boston, which housed people with mental illness before it closed in 1992. More than 700 former residents were buried there, with many graves originally marked only with a number.

The Massachusetts hospital’s grounds were redeveloped into a condominium complex. The rehabilitated cemeteries now have individual gravestones and a large historical marker, explaining what the facility was and who lived there. The sign notes that some past methods of caring for psychiatric patients seem “barbarous” by today’s standards, but the text portrays the staff as well-meaning. It says the institution “attempted to alleviate the problems of many of its members with care and empathy that, although not always successful, was nobly attempted.”

Deegan has helped other groups across the country organize renovations of similar cemeteries. She urges communities to include former residents of the facilities in their efforts.

Iowa’s Glenwood Resource Center started as a home for orphans of Civil War soldiers. It grew into a large institution for people with disabilities, many of whom lived there for decades. Its population peaked at more than 1,900 in the 1950s, then dwindled to about 150 before state officials decided to close it.

Werger, 32, said some criticisms of the institution were valid, but he remains grateful for the support the staff gave him until he was stable enough to move into community housing in 2018. “They helped change my life incredibly,” he said. He thinks the state should have fixed problems at the facility instead of shutting it.

He said he hopes officials preserve historical parts of the campus, including stately brick buildings and the cemetery. He wishes the graves had more extensive headstones, with information about the residents buried there. He would also like to see signs installed explaining the place’s history.

Two former employees of the Glenwood facility recently raised concerns that some of the graves may be mismarked. But officials with the Iowa Department of Health and Human Services, which ran the institution, said they have extensive, accurate records and recently placed stones on three graves that were unmarked.

Department leaders declined to be interviewed about the cemetery’s future. Spokesperson Alex Murphy wrote in an email that while no decisions have been made about the campus, the agency “remains committed to ensuring the cemetery is protected and treated with dignity and respect for those who have been laid to rest there.”

Glenwood civic leaders have formed a nonprofit corporation that is negotiating with the state over development plans for the former institution. “We’re trying to make the best of a tough situation,” said Larry Winum, a local banker who serves on the new organization’s board.

Tentative plans include tearing down some of the existing buildings and creating up to 900 houses and apartments.

Winum said redevelopment should include some kind of memorial sign about the institution and the people buried in the cemetery. “It will be important to us that those folks be remembered,” he said.

Activists in other states said properly honoring such places takes sustained commitment and money.

Jennifer Walton helped lead efforts in the 1990s to properly mark graves and improve cemetery upkeep at state institutions in Minnesota.

Some of the cemeteries are deteriorating again, she said. Activists plan to ask Minnesota legislators to designate permanent funding to maintain them and to place explanatory markers at the sites.

“I think it’s important, because it’s a way to demonstrate that these spaces represent human beings who at the time were very much hidden away,” Walton said. “No human being should be pushed aside and ignored.”

On a recent day, just one of the Glenwood graves had flowers on it. Retired managers of the institution said few people visit the cemetery, but amateur genealogists sometimes show up after learning that a long-forgotten ancestor was institutionalized at Glenwood and buried there.

Former grounds supervisor Max Cupp said burials had become relatively rare over the years, with more families arranging to have deceased residents’ remains transported to their hometown cemeteries.

One of the last people buried in the Glenwood cemetery was Kenneth Rummells, who died in 2022 at age 71 after living many years at the institution and then at a nearby group home overseen by the state. His guardian was Kenny Jacobsen, a retired employee of the facility who had known him for decades.

Rummells couldn’t speak, but he could communicate by grunting, Jacobsen said. He enjoyed sitting outside. “He was kind of quiet, kind of a touch-me-not guy.”

Jacobsen helped arrange for a gravestone that is more detailed than most others in the cemetery. The marker includes Rummells’ full name, the dates of his birth and death, a drawing of a porch swing, and the inscription “Forever swinging in the breeze.”

Jacobsen hopes officials figure out how to maintain the cemetery. He would like to see a permanent sign erected, explaining who is buried there and how they came to live in Glenwood. “They were people too,” he said.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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William Lopez remembers clearly the day in June 2017 when he says he was asked to call the spouse of a college friend who had just died and ask for her eyes.

The spouse hadn’t responded to calls from other employees at the Rocky Mountain Lions Eye Bank, he said. As Lopez recalled, his supervisor thought a friend’s personal number would have more success.

Lopez refused. “I went for a walk,” he said.

Even without Lopez’s help, the eye bank that procures corneas from deceased donors in Wyoming and Colorado eventually collected his friend’s corneas, Lopez said. Lopez, who had entered the field to help people, became increasingly disillusioned during his three years working with the eye bank, despite rising from a technician to the distribution manager, and ultimately quit.

Checking the “donor” box on a driver’s license application, people may picture their heart, kidneys, or other organs saving another person’s life should the worst happen.

They are less likely to consider that tissues — corneas, tendons, bone marrow, skin, bone — are also covered by that checked box. In fact, donated tissues are collected much more frequently than organs, and corneas are the most commonly transplanted body part in the U.S., with nearly 51,000 transplants last year, according to the Eye Bank Association of America.

Organ and tissue donations are guided by different rules, with less transparency and what critics identify as more self-policing in the tissue donation industry. In Wyoming and Colorado, where the Rocky Mountain Lions Eye Bank estimates it collects eye tissue from about 2,500 deceased donors a year, that has contributed to a tense work environment resulting in damaged or wasted tissues due to accidents, four former eye bank employees say.

“I think there’s an urgent need for stricter oversight of the donation process in general, particularly for eye and tissue banks,” said Janell Lewis, who worked at the Rocky Mountain Lions Eye Bank for 12 years, managing public relations and overseeing fundraising before she quit in February 2023.

John Lohmeier, executive director of the Rocky Mountain Lions Eye Bank, declined to be interviewed for this article. In a prepared statement, he said he couldn’t comment on personnel matters or specific incidents raised by the former employees.

But generally, he wrote, “there are internal procedures that have been in place and continue to be followed to investigate and/or report any incident that would impact health and safety concerns.”

Lewis, Lopez, and two other former eye bank employees recalled one or more of the following problems during their time at Rocky Mountain Lions Eye Bank:

• Removal of eye tissue from the wrong body
• Damage or destruction of corneas due to improper removal
• Removal of corneas from a donor with a high-risk family history that could endanger a transplant recipient
• Lack of transparency about whether errors were being reported to federal agencies
• Pressuring and bullying of technicians
• High turnover and brief training of low-paid and inexperienced technicians

The Windshield of the Eye

The cornea is considered the windshield of the eye. It is a clear dome that protects the eye from contaminants, maintains fluid balance, and filters light. Recipients of cornea donations typically need transplants because of trauma, infection, or other conditions that cause blindness or blurred or cloudy vision.

The Rocky Mountain Lions Eye Bank is one of about 60 eye banks operating in the U.S., which leads the world in corneal transplants. New technicians often arrive at the eye bank untrained, sometimes with only a high school diploma, to perform the grim job of removing corneas from recently deceased corpses for about the same wages many fast-food workers earn.

But what eye bank technicians may lack in education and training, they generally make up for with a strong belief in the mission, according to the former employees. They said they joined the Rocky Mountain Lions Eye Bank because they wanted to help restore people’s sight.

The nonprofit employs about 70 people across Colorado and Wyoming, according to a tax filing submitted in 2023. Those records also show a net income of less than $1 million and more than $16 million in assets. Lohmeier was paid about $142,000.

Organs vs. Tissue

Organ donations fall under the purview of the Health Resources and Services Administration, and public data details performance and financial transaction records of organ procurement groups. Tissue donation is regulated by the Food and Drug Administration, as well as national industry groups, and tissue bank transactions, performance, and outcomes are not available to the public.

There’s no reason tissues and organs should be treated differently, said Robert Dickson, medical director for the Washtenaw County Tuberculosis Clinic in Michigan. A patient in his county died from a bone graft contaminated with tuberculosis just a couple of years after a contaminated bone graft killed eight other patients.

He compared the tissue regulatory environment to the Wild West and called it a major public health concern.

“It’s fundamentally no different from an organ transplant. You’re taking tissue from one deceased patient and putting it into a living recipient. But it is not regulated and not tested as rigorously,” he said.

Marc Pearce, president and CEO of the American Association of Tissue Banks, said such cases are very rare.

“We don’t believe that we’ve proven ourselves to be not capable of regulating ourselves,” he said.

FDA officials disagree that the tissue industry is largely self-regulated, pointing to federal rules that require certain organizations to register with the agency and provide a list of human cells or tissues they recover, store, or distribute.

The rules set donor eligibility requirements, and the agency inspects tissue establishments, including eye banks, said spokesperson Carly Pflaum.

“The FDA has implemented a tiered risk-based approach for the regulation of human cell, tissue and cellular and tissue-based products,” Pflaum wrote.

KFF Health News and WyoFile months ago requested reports of adverse events associated with the Rocky Mountain Lions Eye Bank, but the FDA has yet to provide them. FDA dashboards show the eye bank has not issued a recall since 2017, and inspections since at least 2009 have not resulted in any official action.

The tissue industry is largely self-monitored and the performance of eye banks is tracked internally, whereas the federal government publishes annual performance reports for organ procurement groups. Health care providers are not required to report to the FDA adverse events resulting from tissue transplants.

Organ transplant providers are required to report safety events in recipients within 72 hours to the Organ Procurement and Transplantation Network, which operates under contract with the U.S. Department of Health and Human Services. That includes an organ going unused because it was delivered to the wrong location. They have 24 hours if, for example, the recipient gets an infection or disease that may have been from the new organ.

Other countries have public registries detailing the outcomes of corneal transplants, including Australia, the United Kingdom, and Sweden. A similar registry in the U.S. could help monitor outcomes for patients and identify adverse events from transplant procedures, eye doctors and researchers wrote in the journal Ophthalmology Science.

Tissue bank industry groups are responsible for much of the oversight of their dues-paying members. Transplanting surgeons may report adverse reactions to the tissue bank, which generally then conducts a review and submits a report to the FDA and the Eye Bank Association of America or the American Association of Tissue Banks.

Nearly all eye banks in the U.S. are members of the Eye Bank Association of America, which inspects member banks at least every three years as part of its accreditation process, but such inspection reports aren’t publicly available. Safety is paramount, association president Kevin Corcoran said, and the association’s medical standards require eye banks to request patient outcome information from transplanting surgeons a few months after surgery.

“We want to make sure we don’t have an eye bank that is slipping in their performance or failing to recover tissue,” he said. He declined to comment on any individual eye bank’s performance or release quality or transplantation data, complaints filed, or investigations undertaken.

No investigations have resulted in corrective action, he said, in the 13 years he has been at the association. The Rocky Mountain Lions Eye Bank is an accredited member of the association.

Balancing Mission and Stress

Several of the former employees were hesitant to speak about the Rocky Mountain Lions Eye Bank because they didn’t want to sully the reputation of an industry they believe is essential for improving people’s lives and honoring the wishes of the dead.

But they described a high-pressure environment that they said led to many of their colleagues leaving and errors that reduced the number of successful retrievals.

Mackenzie Urban started recovering corneas as a technician for the eye bank in 2019 after finishing her bachelor’s degree. She saw it as a temporary job as she applied for medical school. But within a year of recovering her first cornea, she said, enough employees had left that she became the senior recovery technician and was training others.

She used limes for the training, guiding her students on how to use a scalpel to remove the peel without nicking the fruit beneath. Success meant lifting the peel off the lime without any juice spilling out.

“If you’re stressed, you’re going to shake,” Urban said.

Outside factors can compound the challenges of performing the delicate procedure. Maybe the coroner had drawn fluid from beneath the cornea, making collection much trickier, she said. After a person has been dead for about 24 hours, the eyes tend to deflate to the point of uselessness, adding time pressure to collecting donations, Urban said.

Sometimes, Urban said, another technician would be working on a body simultaneously, so that the entire body was moving around while she was trying to do the delicate procedure.

Interactions with grieving families could be intense, too. Sometimes, families would hug her, thankful that something good would come of their loss. Other times, they were hostile, such as the time one relative of a potential donor told her to “Cut your own f****** eyes out, you b****,” she recalled.

Urban appreciates the work the eye bank performs and doesn’t regret her time there. She said she respected that “they had a real commitment to serving the community and keeping prices low.” (It’s illegal to sell human body parts for transplant, but companies get reimbursed varying amounts for the expenses of harvesting, preparing, and shipping tissues.)

But the workplace culture made it untenable for her, she said. For example, Urban said, she was reprimanded and told that she needed to “buck up or get out” because she declined to harvest corneas from a person who died from an unknown cause. The body was purple from the neck down, covered in oozing blisters and with opaque flecks in the eyes, Urban said.

When Irish Eyes Are Smiling

The Rocky Mountain Lions Eye Bank has international contracts and ships corneas to Japan and the U.K., among other destinations. It became the exclusive eye tissue provider for Ireland when that country stopped collecting corneas over fears of transmitting mad cow disease. That means anyone who has received a cornea transplant in Ireland in the past two decades likely now sees thanks to a person who died in Colorado or Wyoming, according to the Irish Blood Transfusion Service.

Lohmeier, the eye bank CEO, said local needs are prioritized for donations, while international shipments help fulfill the eye bank’s mission and “ensure that all viable corneas are transplanted, giving the gift of restored sight.”

The U.S. is one of the few nations with a cornea surplus. FDA inspection reports confirmed that the Rocky Mountain Lions Eye Bank procures more tissue than its geographic area can use.

The demand for international orders contributed to the high-pressure environment, Lopez said.

Employee turnover and the stress of the job resulted in the collection of corneas of poor quality, Lewis said. Local hospitals inquired about why so many corneas weren’t being transplanted, she added.

The leading reason was recovery errors that damaged the tissue, Lewis said.

Lohmeier disagreed that there was a significant decline in corneas being placed. “We do not believe this description accurately reflects the state of corneal recovery and transplants,” he said.

Internal records showed that about half of recovered corneas in November 2022 had moderate to heavy stress. The Eye Bank Association of America does not have comparable national data. The closest figure it tracks is the proportion, among tissues that were prepared but not transplanted, that were unable to be transplanted because of damage during processing; in 2022, it was a quarter.

Ashi Moore, who used to lead the Rocky Mountain Lions Eye Bank’s quality assurance department, said she once filed a report to the FDA after a donor’s eye tissues were removed despite a family history indicating a high risk of Creutzfeldt-Jakob disease. The disease, which should have been disqualifying for donation purposes, is a fatal brain disorder that can be transmitted through infected tissue.

The issue was caught before the corneas could be placed in someone else’s eyes, but it should never have gotten to the point that the corneas were removed from the body, Moore said.

At least once, a technician retrieved corneas from the wrong body, according to Moore and other former employees (The FDA was unable to provide records to confirm that report by publication). Moore said she should have been told about the case of mistaken identity immediately but said she wasn’t made aware of it until after the eye bank’s leaders handled the situation themselves.

She said she couldn’t find evidence that the eye bank had reported the error to the FDA. It was one of the major reasons she decided to leave the organization, though she had derived a strong sense of purpose from working at the eye bank, she said.

When Lewis resigned, officials at the nonprofit eye bank offered her $5,000 to sign a severance agreement with a nondisparagement provision. She declined.

Lewis said she would like to see states hold tissue recovery agencies to the same standards as other organizations that handle corpses, such as hospitals, coroners, and funeral homes. And if they fail to meet those standards, they need to be held accountable to build public trust, she said.

Lewis’ and Lopez’s negative experiences with the eye bank had another consequence. Each decided they no longer wanted to be an organ or tissue donor.

“After witnessing and experiencing so many issues, I no longer feel comfortable with the potential of my family having to go through that when the time comes,” Lewis said.

WyoFile is an independent nonprofit news organization focused on Wyoming people, places, and policy.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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This spring, a San Diego toddler spent two days in a pediatric intensive care unit after a rattlesnake bit his hand in his family’s backyard.

The bills that followed were staggering, with the lifesaving antivenom the 2-year-old needed accounting for more than two-thirds of the total cost — $213,000.

Why is antivenom so expensive? One explanation is the markup hospitals add to balance overhead costs and make money. Another explanation is a lack of meaningful competition. There are only two rattlesnake antivenoms approved by the Food and Drug Administration.

Stacie Dusetzina, a professor of health policy at Vanderbilt University Medical Center, said it can be difficult to sort out drug pricing because a hospital bill is often an instrument insurers and hospitals use to negotiate prices. Patients such as the Pfeffers often get stuck in the middle.

“When you see the word ‘charges,’ that’s a made-up number. That isn’t connected at all, usually, to what the actual drug cost,” Dusetzina said.

Read more here.

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