“I really wanted to take control over how I left this world,” said the 61-year-old who lives in Lancaster. “I decided that this was an option for me.”

Dying with medical assistance wasn’t an option when Milano learned in early 2023 that her disease was incurable. At that point, she would have had to travel to Switzerland — or live in the District of Columbia or one of the .

But Vermont lifted its residency requirement in May 2023, followed by Oregon two months later. (Montana effectively allows aid in dying through a 2009 court decision, but that ruling doesn’t spell out rules around residency. And though New York and legislation that would allow out-of-staters to secure aid in dying, neither provision passed.)

Despite the limited options and the challenges — such as finding doctors in a new state, figuring out where to die, and traveling when too sick to walk to the next room, let alone climb into a car — dozens have made the trek to the two states that have opened their doors to terminally ill nonresidents seeking aid in dying.

At least 26 people have traveled to Vermont to die, representing nearly 25% of the reported assisted deaths in the state from May 2023 through this June, according to the Vermont Department of Health. In Oregon, 23 out-of-state residents died using medical assistance in 2023, just over 6% of the state total, according to the .

Oncologist Charles Blanke, whose clinic in Portland is devoted to end-of-life care, said he thinks that Oregon’s total is likely an undercount and he expects the numbers to grow. Over the past year, he said, he’s seen two to four out-of-state patients a week — about one-quarter of his practice — and fielded calls from across the U.S., including New York, the Carolinas, Florida, and “tons from Texas.” But just because patients are willing to travel doesn’t mean it’s easy or that they get their desired outcome.

“The law is pretty strict about what has to be done,” Blanke said.

As in other states that allow what some call physician-assisted death or assisted suicide, Oregon and Vermont require patients to be assessed by two doctors. Patients must have less than six months to live, be mentally and cognitively sound, and be physically able to ingest the drugs to end their lives. Charts and records must be reviewed in the state; neglecting to do so constitutes practicing medicine out of state, which violates medical licensing requirements. For the same reason, the patients must be in the state for the initial exam, when they request the drugs, and when they ingest them.

State legislatures impose those restrictions as safeguards — to balance the rights of patients seeking aid in dying with a legislative imperative not to pass laws that are harmful to anyone, said Peg Sandeen, CEO of the group . Like many aid-in-dying advocates, however, she said such rules create undue burdens for people who are already suffering.

Diana Barnard, a Vermont palliative care physician, said some patients cannot even come for their appointments. “They end up being sick or not feeling like traveling, so there’s rescheduling involved,” she said. “It’s asking people to use a significant part of their energy to come here when they really deserve to have the option closer to home.”

Those opposed to aid in dying include that say taking a life is immoral, and who argue their job is to make people more comfortable at the end of life, not to end the life itself.

Anthropologist , who interviewed dozens of terminally ill patients while researching her 2022 book, “,” said she doesn’t expect federal legislation to settle the issue anytime soon. As the Supreme Court did with abortion in 2022, it ruled assisted dying to be a states’ rights issue in 1997.

During the 2023-24 legislative sessions, (including Milano’s home state of Pennsylvania) considered aid-in-dying legislation, according to the advocacy group . Delaware was the sole state to , but the governor has yet to act on it.

Sandeen said that many states initially pass restrictive laws — requiring 21-day wait times and psychiatric evaluations, for instance — only to eventually repeal provisions that prove unduly onerous. That makes her optimistic that more states will eventually follow Vermont and Oregon, she said.

Milano would have preferred to travel to neighboring New Jersey, where aid in dying has been legal since 2019, but its residency requirement made that a nonstarter. And though Oregon has more providers than the largely rural state of Vermont, Milano opted for the nine-hour car ride to Burlington because it was less physically and financially draining than a cross-country trip.

The logistics were key because Milano knew she’d have to return. When she traveled to Vermont in May 2023 with her husband and her brother, she wasn’t near death. She figured that the next time she was in Vermont, it would be to request the medication. Then she’d have to wait 15 days to receive it.

The waiting period is standard to ensure that a person has what Barnard calls “thoughtful time to contemplate the decision,” although she said most have done that long before. Some states have shortened the period or, like Oregon, have a waiver option.

That waiting period can be hard on patients, on top of being away from their health care team, home, and family. Blanke said he has seen as many as 25 relatives attend the death of an Oregon resident, but out-of-staters usually bring only one person. And while finding a place to die can be a problem for Oregonians who are in care homes or hospitals that prohibit aid in dying, it’s especially challenging for nonresidents.

When Oregon lifted its residency requirement, Blanke advertised on Craigslist and used the results to compile a list of short-term accommodations, including Airbnbs, willing to allow patients to die there. Nonprofits in states with aid-in-dying laws also maintain such lists, Sandeen said.

Milano hasn’t gotten to the point where she needs to find a place to take the meds and end her life. In fact, because she had a relatively healthy year after her first trip to Vermont, she let her six-month approval period lapse.

In June, though, she headed back to open another six-month window. This time, she went with a girlfriend who has a camper van. They drove six hours to cross the state border, before sitting in a parking lot where Milano had a Zoom appointment with her doctors rather than driving three more hours to Burlington to meet in person.

“I don’t know if they do GPS tracking or IP address kind of stuff, but I would have been afraid not to be honest,” she said.

That’s not all that scares her. She worries she’ll be too sick to return to Vermont when she is ready to die. And, even if she can get there, she wonders whether she’ll have the courage to take the medication. About one-third of people approved for assisted death don’t follow through, Blanke said. For them, it’s often enough to know they have the meds — the control — to end their lives when they want.

Milano said she is grateful she has that power now while she’s still healthy enough to travel and enjoy life. “I just wish more people had the option,” she said.

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“Quería tener el control sobre cómo iba a dejar este mundo”, dijo la mujer de 61 años que vive en Lancaster. “Decidí que era algo que yo podía elegir”.

Usar asistencia médica para morir no fue una opción cuando Milano supo, a principios de 2023, que su enfermedad era incurable. En ese momento, habría tenido que viajar a Suiza, o vivir en el Distrito de Columbia o en uno de los .

Pero Vermont eliminó su requisito de residencia en mayo de 2023, seguido de Oregon dos meses después. (Montana permite la muerte asistida en virtud de una decisión judicial de 2009, pero ese fallo no establece normas sobre la residencia. Y aunque Nueva York y consideraron recientemente una legislación que permitiría a los residentes fuera del estado acceder a la ayuda médica para morir, ninguna de las dos disposiciones fue aprobada).

A pesar de las limitadas opciones y los retos —como encontrar médicos en un nuevo estado, decidir dónde morir y viajar cuando se está demasiado enfermo para caminar hasta el dormitorio o para subirse a un coche— docenas de personas han hecho el viaje a los dos estados que han abierto sus puertas a los enfermos terminales no residentes que buscan ayuda para morir.

Al menos 26 personas han viajado a Vermont para morir, lo que representa casi el 25% de las muertes asistidas registradas en el estado desde mayo de 2023 hasta junio de 2024, según el Departamento de Salud de Vermont. En Oregon, 23 residentes de fuera del estado murieron utilizando asistencia médica en 2023, algo más del 6% del total del estado, según la .

El oncólogo Charles Blanke, cuya clínica en Portland se especializa en la atención al final de la vida, señaló que el total de Oregon es probablemente el resultado de un recuento inexacto y espera que las cifras aumenten. En el último año, dijo, ha atendido de dos a cuatro pacientes de fuera del estado a la semana —aproximadamente una cuarta parte de su consulta— y ha recibido llamadas de todo el país, incluyendo Nueva York, las Carolinas, Florida y “toneladas de Texas”. Pero que los pacientes estén dispuestos a viajar no significa que sea fácil ni que obtengan el resultado deseado.

“La ley es muy estricta sobre lo que hay que hacer”, afirmó Blanke.

Como en otros estados que permiten lo que algunos llaman muerte asistida por un médico o suicidio asistido, Oregon y Vermont exigen que los pacientes sean evaluados por dos médicos.

Los pacientes deben tener menos de seis meses de vida, estar mental y cognitivamente sanos, y ser físicamente capaces de tomar los fármacos para poner fin a sus vidas. Los historiales deben revisarse en el estado; no hacerlo constituye ejercer la medicina fuera del estado, lo que infringe los requisitos para obtener la licencia médica.

Por la misma razón, los pacientes deben estar en el estado para el examen inicial, cuando solicitan los fármacos y cuando los toman.

Las legislaturas estatales imponen esas restricciones como salvaguardias, para equilibrar los derechos de los pacientes que solicitan ayuda para morir con el imperativo legislativo de no aprobar leyes que puedan perjudicar a las personas, explicó Peg Sandeen, CEO del grupo (Muerte con Dignidad). Sin embargo, al igual que muchos defensores de la muerte asistida, Sandeen afirma que estas normas suponen una carga excesiva para las personas que ya están sufriendo.

Diana Barnard, médica de cuidados paliativos de Vermont, aseguró que algunos pacientes ni siquiera pueden ir a sus citas. “Terminan enfermándose más o no quieren viajar, por lo que hay que reprogramar las citas”, explicó. “Se les está pidiendo a los pacientes que utilicen una parte importante de su energía para venir aquí cuando realmente merecen tener la opción más cerca de casa”.

Entre quienes se oponen a la muerte asistida están que afirman que quitar una vida es inmoral, y que argumentan que su trabajo es hacer que los pacientes terminen sus vidas de manera más confortable, no acabar con la vida en sí.

La antropóloga , que entrevistó a docenas de enfermos terminales durante la investigación de su libro de 2022, (“El día que muera: la historia no contada de la muerte asistida en Estados Unidos”), afirmó que no espera que la legislación federal zanje pronto la cuestión. Al igual que hizo con el aborto en 2022, la Corte Suprema en 1997 dictaminó que la muerte asistida era una cuestión de derechos de los estados.

Durante las sesiones legislativas de 2023-24, (incluido Pennsylvania, el estado natal de Milano) consideraron la posibilidad de promulgar leyes de muerte asistida, según la organización . Delaware fue el único estado que , pero el gobernador aún no ha tomado medidas al respecto.

Sandeen señaló que muchos estados aprueban inicialmente leyes restrictivas —que exigen tiempos de espera de 21 días y evaluaciones psiquiátricas, por ejemplo— para acabar derogando las disposiciones que resultan muy complejas. Por eso es optimista y cree que más estados acabarán siguiendo el ejemplo de Vermont y Oregon.

Milano habría preferido viajar a la vecina Nueva Jersey, donde la eutanasia es legal desde 2019, pero su requisito de residencia lo hizo imposible. Y aunque Oregon tiene más proveedores que el estado mayoritariamente rural de Vermont, Milano optó por el viaje en coche de nueve horas a Burlington porque era menos agotador física y financieramente que un viaje a través del país.

La logística era clave porque Milano sabía que tendría que volver. Cuando viajó a Vermont en mayo de 2023 con su marido y su hermano, no estaba al borde de la muerte. Pensó que la próxima vez que fuera a Vermont sería para pedir la medicación. Entonces tendría que esperar 15 días para recibirla.

El período de espera es estándar para garantizar que una persona tenga lo que Barnard llama “un tiempo de reflexión antes de decidirse”, aunque dijo que la mayoría ya lo había hecho mucho antes. Algunos estados han acortado la espera o, como Oregon, pueden solicitar una exención.

Ese tiempo de espera puede ser duro para los pacientes, después de tener que alejarse de su apoyo médico, de su hogar y de su familia. Blanke contó que ha visto hasta 25 familiares asistir a la muerte de un residente de Oregon, pero los que viven fuera del estado suelen traer sólo a una persona.

Y aunque encontrar un lugar donde morir puede ser un problema para los residentes de Oregon que están en residencias o en hospitales que prohíben la muerte asistida, es especialmente difícil para los no residentes.

Cuando Oregon eliminó el requisito de residencia, Blanke publicó un anuncio en Craigslist y utilizó los resultados para recopilar una lista de alojamientos de corto plazo, incluidos Airbnbs, dispuestos a permitir que los pacientes murieran allí. Las organizaciones sin ánimo de lucro en los estados con leyes de muerte asistida también mantienen estas listas, dijo Sandeen.

Milano no ha llegado al punto en que necesite encontrar un lugar donde tomar la medicación y poner fin a su vida. De hecho, como tuvo un año relativamente saludable después de su primer viaje a Vermont, dejó que transcurriera su período de aprobación de seis meses.

En junio, sin embargo, volvió para abrir otro plazo de seis meses. Esta vez fue con una amiga que tiene una casa rodante. Condujeron seis horas para cruzar la frontera del estado, parando en antes de detenerse en un estacionamiento donde Milano tenía una cita de Zoom con sus médicos en lugar de conducir tres horas más hasta Burlington para reunirse en persona.

“No sé si rastrean el GPS o las direcciones de IP, pero me habría dado miedo no ser sincera”, afirmó.

Eso no es lo único que la asusta. Le preocupa estar demasiado enferma para volver a Vermont cuando esté lista para morir. Y, aunque pueda llegar allí, se pregunta si tendrá el valor de tomar la medicación. Alrededor de un tercio de las personas a las que se les aprueba la muerte asistida no lo hacen, explicó Blanke. Para ellos, a menudo es suficiente saber que tienen la medicación —el control— para poner fin a sus vidas cuando lo deseen.

Milano dijo que está agradecida de tener ese poder ahora que aún está lo bastante sana para viajar y disfrutar de la vida. “Ojalá más gente tuviera esa opción”, afirmó.

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But when it came time to write a death notice, Deborah Blum was clearheaded: In a to her smart, funny, popular child, who had recently come out as nonbinary, she was open and specific about the mental health struggles that led to Esther Iris’ death.

“Esther’s whole thing was that people should know and talk about mental health and it shouldn’t be a secret,” Deborah Blum told ºÚÁϳԹÏÍø News. “The least I could do was to be honest and tell people. I think being embarrassed just makes it worse.”

While it was once unheard-of to mention suicide as a cause of death in news obituaries and paid death notices, that has been changing, especially in the past 10 years, said Dan Reidenberg, a psychologist and managing director of . High-profile suicides — such as those of comic actor Robin Williams in 2014, fashion designer Kate Spade in 2018, and dancer Stephen “tWitch” Boss in 2022 — have helped reduce the stigma surrounding suicide loss. So has advertising for depression and anxiety medications, which has helped normalize that mental illnesses are health conditions. The covid-19 pandemic also drew attention to the prevalence of mental health challenges.

“The stigma is changing,” Reidenberg said. “There is still some, but it’s less than it used to be, and that’s increasing people’s willingness to include it in an obituary.”

While there’s no right or wrong way to write death announcements, mental health and grief experts said the reluctance to acknowledge suicide has implications beyond the confines of a public notice. The stigma attached to the word affects everything from how people grieve to how people help prevent others from ending their own lives.

Research shows that talking about suicide can help , but studies have also found that can follow news reports about someone dying that way — a phenomenon known as “.” The latter is an argument people make for not acknowledging suicide in obituaries and death notices.

However, Reidenberg said, the subject can be addressed responsibly. That includes telling a balanced story, similar to what Deborah Blum did, acknowledging Esther Iris’ accomplishments as well as their struggles. It means leaving out details about the method or location of the death, and not glorifying the deceased in a way that might encourage vulnerable readers to think dying by suicide is a good way to get attention.

“We don’t ever want to normalize suicide, but we don’t want to normalize that people can’t have a conversation about suicide,” Reidenberg said.

Having that conversation is an important part of the grieving process, said , a professor of sociology in medicine at Weill Cornell Medical College in New York and an expert on .

“Part of adjusting to the loss of someone is coming up with a story of what happened and why,” she said. “To the extent that you can’t be honest and acknowledge what happened if it’s a death due to suicide, that will complicate, if not impede, your ability to fully and accurately process your loss.”

People close to the deceased often know when a death was by suicide, said Reidenberg, particularly in the case of young people. “Being honest can lead to information and awareness, whereas if we keep it shrouded in this big mystery it doesn’t help,” he added.

A study about that Prigerson recently conducted identified avoidance as an impediment to healing from grief. “Not acknowledging how someone died, denying the cause of death, avoiding the reality of what happened is a significant barrier to being able to adjust to what happened and to move forward,” she said.

Researchers are increasingly seeing bereavement as a , Prigerson said, and as social beings, people look to others for comfort and solace. That’s another reason the stigma attached to suicide is harmful: It keeps people from opening up.

“The stigma is based on the perception that others will judge you as being an inadequate parent, or not having done enough,” Prigerson said. “This whole thing with obituaries is all about others — it’s about how people are going to read what happened and think less of you.”

Stigma, shame, and embarrassment are among the reasons grieving family members have traditionally avoided acknowledging suicide in obituaries and death notices. It’s also why, if they do, they may be more likely to address it indirectly, either by describing the death as “sudden and unexpected” or by soliciting donations for mental health programs.

Economics can also factor in — sometimes people are secretive because of life insurance plans that exclude payouts for suicides. Sometimes they’re trying to protect reputations, theirs as well as those of the deceased, particularly in religious communities where suicide is considered a sin.

Sometimes they’re operating under what Adam Bernstein, the obituary editor at The Washington Post, sees as “a mistaken belief” that an obituary is a form of eulogy that should speak to the highest memories of a person, and suicide doesn’t fit that agenda. People don’t include the word in paid death notices for the same reason. Bernstein, who is also president of , said that at the Post, obituaries mention suicide when the reporter can confirm it as a cause of death.

Avoiding the word suicide doesn’t necessarily mean someone is in denial. In the days after a loss, which is when most obituaries and death announcements are written, it’s often profoundly difficult to face the truth, especially in the case of suicide, according to , aÌýpsychologist and formerÌývice president at theÌý.

Even when people can admit the truth to themselves, they might have trouble expressing it to others, said , a suicide bereavement expert in New York who works with mourners through her business, Coping After Suicide. In the support groups she runs, she said, people vary in how open they are willing to be. For example, in the group for mothers who have lost a child to suicide, everyone acknowledges that reality — after all, that’s why they’re there — but they don’t all do so the same way.

“Some of them will refer to ‘when this happened’ or ‘before all this,’” Harpel said, cautioning against holding all mourners to the same standard. “They’re not pretending it was something else, but using the word ‘suicide’ is so confronting and so painful that even in the safest context it’s very, very hard for them to say it out loud.”

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In the weeks after Stanford University soccer goalie Katie Meyer, 22, died by suicide last March, her grieving teammates were inseparable even when not training.

Coaches adjusted practices to give the athletes time and space to make sense of losing their friend and team captain. They offered to cancel the spring season, but the players declined, said Melissa Charloe, who started as a Stanford assistant women’s soccer coach the day Meyer died.

“It’s hard because there’s no playbook on how to do this,” Charloe said.

No playbook exists because, until recently, it was relatively uncommon . But at least , including Meyer, ended their lives in a two-month period last year. And a released in May found that student-athletes say they are experiencing more mental health concerns, anxiety, and depression than they reported in surveys conducted before the covid-19 pandemic took hold in 2020.

Suicide is the on college campuses. And despite the overall rise in mental health concerns there, universities have been caught off guard when student-athletes have died by suicide. Traditionally, sports psychologists focused on mental health as it related to performance on the field. Their goal was to help athletes improve physically — jump higher, run faster — not navigate mental health crises, largely because of a misperception that college athletes were less susceptible to mental health concerns.

What about student athletes and mental health is . But many experts thought athletes were insulated , in part because and athletes have a steady stream of people around them, including coaches, trainers, and teammates, said Kim Gorman, director of counseling and psychological services at .

“They’re kind of used to pain — it’s not so foreign to them,” added organizational psychologist , deputy director of the at the University of Colorado’s Anschutz Medical Campus.

Still, athletes face such as balancing sports, schoolwork, fears of career-ending injuries, and mistakes that can lead to ridicule that gets amplified on social media. With and the effects of the pandemic continuing to threaten well-being, high-profile suicides highlight how to deal with the unthinkable — and how to try to prevent it from happening again.

In the wake of such suicides, schools are reevaluating the kind of mental health support they provide. Creating a safe space to talk about grief with someone who understands suicide is a critical first step, said psychologist , a vice president at the American Foundation for Suicide Prevention.

“Many professionals are good with grief, but suicide grief can be a little different,” she said, as it often involves guilt and questions about why someone would end their life.

Gina Meyer, Katie’s mother, and her husband, Steve, have developed an initiative, , to ensure that all students have a trusted advocate to turn to in times of trouble. “We know that the bravest thing you can do is ask for help,” she said.

The Meyers filed a against Stanford in November alleging that their daughter ended her life after receiving an email from the university about disciplinary action against her. Stanford University spokesperson Dee Mostofi did not answer questions about the case, but Stanford saying the Meyers’ suit contains misleading information and the school disagrees with their allegations that it is responsible for Katie’s death.

“Like other colleges and universities across the country, Stanford has seen a sharp increase in demand for mental health counseling and other well-being resources over the last two years,” Mostofi said. “Mental health remains not only an ongoing challenge but our most urgent priority.”

After Meyer died, Stanford provided mental health counselors and a sports psychologist to her teammates, but the players said they lobbied the university to pay for Zoom sessions with a specialist, , a clinical social worker in the Sports Medicine Division’s Female Athlete Program at Boston Children’s Hospital.

O’Brien has professional and personal experience dealing with sports and suicide: She was an ice hockey player at Harvard in 1998 when one of the athletes in her university house died. “I wasn’t even extremely close to her, but it affected me profoundly,” she said. “There were no resources to deal with it.”

That’s changing. Colleges are trying to hire more mental health therapists to meet increasing and varied needs. Some, including Stanford and Washington State University, are working with , which provides suicide prevention programming for high school and college students. And crisis support doesn’t happen just in the student health center: Colleges are establishing campus-wide “postvention” programs to prevent suicide contagion.

Before cross-country runner Sarah Shulze, 21, died by suicide at the University of Wisconsin-Madison in April 2022, the athletics department was expanding its professional mental health support from two staffers to six to help the school’s approximately 800 student-athletes, said , the department’s director of mental health and sport psychology. The department, known until eight months ago as “clinical & sport psychology,” changed its name in part because student-athletes were asking for mental health support.

In addition to scheduled appointments, the sports liaisons attend practices, team meetings, training sessions, and competitions to help normalize mental health concerns.

“Gone are the days when we sit in our office and wait for people to knock on the door and talk to us,” Lacocque said.

Student-athletes can also seek free help from the university’s mental health professionals or providers in the community under contract with the University of Wisconsin athletics department. And some women’s cross-country athletes at the school now keep an eye on their teammates when coaches aren’t around, letting the team’s liaison know if they’re concerned about someone’s mental health.

“We don’t want anyone slipping between the cracks,” said teammate Maddie Mooney. “It’s a hard time for everybody, and everybody grieves at different paces and processes things differently.”

Teammate Victoria Heiligenthal, who shared a house with Shulze, said she avoided talking to campus counselors for months after her close friend died. “I only wanted to be alone or be with my friends who really understood the situation,” she said.

Heiligenthal couldn’t bear to stay in the home where she and Shulze had lived, so the university put her and Mooney up in a hotel for a week, and then she stayed awhile at Mooney’s apartment. Once back in her own place, teammates, coaches, training staff, and psychologists checked in on her and Mooney.

But the real game changer for the two was connecting last spring with Stanford soccer players Sierra Enge and Naomi Girma (who now plays professionally). Enge reached out after seeing something Mooney posted on Instagram. Since then, the four have met via Zoom. They have also talked with O’Brien and will join her on a mental health panel at a in June to talk about their experiences of losing a teammate to suicide.

“It was powerful hearing the parallels,” Heiligenthal said. “It made you realize Maddie and I weren’t alone; there were others who were experiencing similar things to us.”

At the University of Wisconsin-Madison and Stanford, athletes honored their late teammates last fall by raising mental health awareness. At a in October, the Wisconsin runners painted green ribbons on the course, put ribbons in race packets, and . At Stanford’s game against UCLA in November, spectators wore green ribbons to highlight the importance of addressing mental health issues.

Stanford won the game, handing UCLA its first loss of the season. The victory was bittersweet. A year earlier, Meyer had spearheaded the team’s first mental health awareness game.

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Three years ago, the newlywed, then 62, was sick with stage 4 lymphoma, sick from two failed rounds of chemotherapy, and sick of living in a trailer park near the University of Texas MD Anderson Cancer Center in Houston. It was fall 2019, and treatment had forced her to migrate 750 miles east from rural New Mexico, where she’d settled only months before her diagnosis.

Chimeric antigen receptor T-cell therapy might have been appealing to BeHanna if it were available closer to her home. But it is offered only at major transplant hospitals.

BeHanna had been living in Houston for six months, suffering through chemotherapy that made her feel awful and didn’t stop her cancer. She wanted to go home to die, but her husband wanted her to give a chance if her doctor would approve it.

The therapy uses a patient’s T cells, a key part of the immune system, to fight cancer. Dr. Michel Sadelain, an immunologist at the Memorial Sloan Kettering Cancer Center in New York and a pioneer of the therapy, describes it as “a living drug — a T cell which has been weaponized against cancer.”

The treatment uses a process called apheresis to extract T cells from the patient and then genetically modifies the cells to add a receptor, the chimeric antigen, which binds with the cancer cells.

Making CAR T cells takes about 10 days, but because only three companies — Bristol Myers Squibb, Gilead Sciences, and Novartis — have FDA approval to produce them commercially, receiving the cells back for infusion can take up to a month. Once in the patient’s bloodstream, the CAR T cells multiply, recognize cancer cells, and kill them. If the therapy works, the patient’s cancer is usually in remission within a month.

For about 10 years, oncologists have used CAR T-cell therapy in clinical trials for patients with blood cancers — including BeHanna, who has diffuse large B-cell lymphoma, and others with lymphoblastic leukemia and multiple myeloma. But until recently, it was FDA-approved only for those who had already had two unsuccessful rounds of more conventional treatment, like chemotherapy. For some types of blood cancer, the therapy leads to remission in . In April, for the first time, the FDA approved CAR T-cell therapy for lymphoma patients whose cancer recurred within 12 months after only one round of more conventional treatment.

That more people will be eligible for CAR T-cell therapy seems like good news, but Dr. Jason Westin, an oncologist at MD Anderson, isn’t immediately optimistic. Westin, chair of the American Society of Clinical Oncology’s government relations committee, is concerned that as more patients become eligible, the cost — $375,000 to $475,000 — will strain the ability of insurers to support it.

Patients who meet the FDA’s threshold for treatment are a relatively small group. “If it’s a tiny, tiny fraction of patients that are getting an expensive treatment, it’s hard on the system but may not be a break point,” Westin said. “But if you increase that slice of pie for patients that get this, it begins to place more stress on limited resources.”

Insurance carriers, including Medicare, pay for CAR T-cell therapy, although according to the Leukemia & Lymphoma Society, they don’t typically cover living expenses for patients who must live away from home, often for months. Blue Cross Blue Shield covered BeHanna’s medical costs but for living expenses reimbursed her only $5,000, a small fraction of what she and her husband spent to live in Houston.

And new research into using the technology to treat other cancers, autoimmune disorders, and even infections could put pressure on the already constrained supply chain.

There are other, less expensive, ways to make CAR T cells besides going to a major pharmaceutical company. Many researchers who work on clinical trials, including Dr. Michael Chu at the Cross Cancer Institute in Edmonton, Alberta, use a bread maker-sized bioreactor made by Miltenyi Biotec to modify T cells in labs. Some medical centers have established in-house T-cell manufacturing platforms that use other bioreactors and protocols.

But the FDA hasn’t granted medical centers and academic institutions approval to manufacture the cells for commercial use, and neither Sadelain nor Westin expect that to happen anytime soon, if at all.

Cost isn’t the only drawback to CAR T-cell therapy. The can be life-threatening — about 2% of patients die as a result of the treatment, according to Chu.

The most common side effect is a cytokine storm. Cytokines are small proteins that help direct the immune system, and their presence means the immune system is working. But sometimes the treatments send the immune system into overdrive, with results ranging from nausea and fever to organ failure.

The potentially toxic response to the treatment has dictated where it can be administered. “If somebody gets bad side effects, they need to be at a place that is able and set up to manage those,” Westin said. “A place that’s used to giving a breast-cancer or lung-cancer treatment — they’re not experiencing how to manage what can potentially be a life-threatening side effect.”

For that reason, the treatment is available at only , where specialists are available to oversee care, Westin said.

That creates an accessibility issue for the of American adults who live at least a half-hour from the nearest transplant center. “These patients have been through so much,” Chu said. “To ask them to go just a little farther, it’s a step too far in some cases, either on a psychological front, financial front, or on a social front.”

That was the case for BeHanna. She didn’t want to participate in another clinical trial. But her husband, Chris, had done so much work, first to learn about the treatment and then to lobby her doctor. “He promised me if it didn’t work, I could go home, and that was all I cared about,” she said. “I didn’t expect it to work.”

To ensure her T cells were healthy enough to be genetically modified, BeHanna had to have more chemo, which meant more time in Houston. About a month passed between the apheresis and when the CAR T cells were ready to be infused. “By the time I received my cells back, I was really, really sick, and I didn’t care if it worked or not,” she said.

For the first few days after the infusion, BeHanna felt fine. But on the third or fourth day, when asked a routine series of questions that tested her neurological function, she was clearly experiencing neurotoxicity — a side effect that reverses itself in most patients. Her temperature shot up. The cytokine storm had begun. She was moved from the CAR T-cell ward to the intensive care unit.

When she woke up a few days later, lucid but weak, all she could remember was that she’d said “a lot of mean, terrible things” to Chris.

BeHanna began to cry as she described the first moments in the ICU as she got her bearings and reached down to touch her stomach. “It was clear to me for the first time in as long as I could remember that I could touch my stomach and it was not hard,” she said. “I could feel the tumor was going away.”

Before the treatment, which she had in October 2019, a scan showed tumors throughout her body: in her armpits, chest, abdomen, and groin. In late November, around Thanksgiving, BeHanna had another scan.

“I had no tumors,” she said. “It was surreal.”

BeHanna is grateful to be alive but said she is frustrated that patients are required to undergo multiple rounds of harsh chemotherapy before being allowed to proceed with a treatment that could so effectively eliminate their cancer.

“CAR-T is a little rough,” she said, but “it wasn’t hard on me because I don’t remember any of it. It was something I was willing to risk because either you do CAR-T or you go home and die.”

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