Who’s involuntary dedication for?

First Opinion is STAT’s platform for fascinating, illuminating, and provocative articles in regards to the life sciences writ massive, written by biotech insiders, well being care staff, researchers, and others.

To encourage strong, good-faith dialogue about points raised in First Opinion essays, STAT publishes chosen Letters to the Editor obtained in response to them. You’ll be able to submit a Letter to the Editor right here, or discover the submission type on the finish of any First Opinion essay.

The story

“I’m a neurologist. My brother has schizophrenia. I help making involuntary dedication simpler,” by Shaheen E. Lakhan

The response

Whereas I don’t share the optimism that the creator does with regard to the present administration offering the wanted sources and infrastructure required to correctly take care of these with extreme psychological well being sickness, I wholeheartedly agree that involuntary dedication must be simpler to supply. My schizophrenic grownup son misplaced his life due to this sickness. He by no means accepted or had any perception into his prognosis and persistently refused all therapy for it. When confronted with a most cancers prognosis in his 40s, his paranoia in regards to the medical career saved him from in search of therapy that would have saved his life. Since he lived in one other state, we had no recourse to pursue guardianship or any pressured therapy for our son. We are going to spend the rest of our lives wishing there had been a greater system.

— Margaret H.

The response

You write: “I’m optimistic that the Trump administration will observe via with the sources, infrastructure, and coverage wanted to make this work as a result of safer, more healthy communities rely on it.” It is a fantasy as a result of he doesn’t care about safer, more healthy communities or individuals in want. He simply desires to warehouse these individuals, so others should not inconvenienced. I can’t think about something he has finished that makes you imagine he would do as you advocate.

— John Pippin, doctor and nonprofit employee

The response

I used to be disturbed by Shaheen Lakhan’s essay supporting involuntary dedication for individuals with severe psychological sickness. As somebody with psychological sickness who has skilled and noticed coercive psychiatric methods, I need to reply.

Lakhan argues that individuals like his brother are “trapped” by mind illness and must be forcibly handled, even towards their will. However what he describes isn’t compassion, it’s management. Framing psychiatric lock-up as equal to treating somebody for a stroke obscures a protracted, brutal historical past of pathologizing individuals’s ache and stripping away their autonomy within the title of therapy. It additionally ignores that individuals with psychological sickness, particularly unhoused, poor, and racialized individuals, are routinely criminalized, abused, and silenced in institutional settings.

Nevertheless, I perceive Lakhan’s urge to assist. A number of years in the past, a cherished one in every of mine expressed a want to finish their life, and I didn’t know what to do. So I introduced them to get an evaluation at a psychiatric hospital — outpatient, I believed. However they have been shortly institutionalized, even with out insurance coverage to cowl their very costly keep. After they obtained out, they described to me the horrifying therapy they obtained. Employees advised them to hope their psychological sickness away. It took days longer than it ought to need to obtain much-needed psychiatric drugs. Group “remedy” periods have been poorly run and deeply stigmatizing. The one factor actually supplied was a lack of autonomy, not actual care, however management. That’s not therapy. That’s survival beneath duress. Worse, racism and homophobia have been rampant. My buddy was queer and didn’t really feel protected in that house.

I nonetheless don’t know what I might do in that scenario once more; I used to be scared. However I do know I might not power them again into a spot like that. I perceive the heartbreak of watching somebody you like spiral. However compassion can’t imply locking individuals up as a result of we discover their struggling uncomfortable. We should combat for care that heals with out cages, and help that doesn’t require surrendering one’s rights. Psychological sickness isn’t a criminal offense. And compelled therapy isn’t care.

 — Jacob Shomali

the response

I’ve represented individuals with psychiatric disabilities for over 40 years. I sympathize with Dr. Lakhan, however he understandably solely sees via the lens of his brother’s struggling. He has by no means needed to reside in a psychiatric facility himself — by no means been in restraints, or not allowed to go outdoors, or been forcibly held right down to be injected. I’ve by no means met a consumer who wished to be homeless, however I hardly ever met purchasers who most popular hospitalization to homelessness — that’s how unhealthy the hospitals are. Additionally, in my lengthy expertise, meds do work with some individuals, however a substantial section of persons are made to take health-threatening drugs that really don’t assist their circumstances. My purchasers get diabetes and acquire large quantities of weight on Zyprexa. For the individuals it helps, it’s price it. However meds are given/pressured on everybody, one dimension matches all, whether or not they assist or not. The housing first initiatives beneath President Biden have been working. Locking everybody up away from the remainder of us is not going to.

— Susan Stefan

The story

“Studying to say no in a medical system that at all times asks physicians for extra, extra, extra,” by Cara Poland

The response

This was a stunning article. I see docs talking about steadiness, disabilities, caregiving, and self-care very sometimes, and the very best physicians burning out of drugs properly earlier than their time. I lived with power ache via most of my medical coaching, and I believed this was the ceremony of passage. It took me years to understand that it was the system that was flawed. It creates docs who doubt, dismiss, and, worse but, gaslight their sufferers after they’re at their most weak. We lose many physicians solely to disabilities and lengthy Covid as a result of creating significant boundaries and accessibility simply doesn’t exist within the U.S. well being care system. We dive deeper right into a well being care supplier scarcity, and the political reply to convey extra docs in appears to be to make medical faculty extra accessible. The larger query is, how can we maintain them there?

— Shimi Sharief

the story

“We’re moms of Duchenne sufferers. Current setbacks with Sarepta should not cease progress,” by Jennifer Handt and Kelly Maynard

The response

Authors and moms Jennifer Handt and Kelly Maynard concern an impassioned and emotional plea to the FDA to not “take away threat from the equation solely”; “to maintain and multiply progress”; and to not be on a “seek for absolute security ensures,” largely with regard to Elevidys.

Nobody is asking the FDA to “take away threat from the equation solely” or to embark on a “seek for absolute security ensures.” Fairly, these affected by devastating progressive, incurable ailments are solely asking that the FDA fulfill its said mission by “defending and selling public well being by guaranteeing the protection and efficacy of human medicine [has been abbreviated],” which sadly doesn’t seem to have occurred within the case of their Elevidys approval. The Elevidys approval was not really helpful by the FDA Overview Committee, as they didn’t discover substantial proof of effectiveness for Elevidys even when utilizing the surrogate endpoint of micro-dystrophin beneath the accelerated approval pathway, which is arguably a much more lax and “versatile” normal for substantial proof of effectiveness than the proof required for conventional approval. Two deaths have occurred in non-ambulatory sufferers with Duchenne muscular dystrophy, a inhabitants for which the FDA Medical Overview Staff particularly didn’t discover proof of efficacy for Elevidys.

Tragically, it seems these sufferers assumed all the threat with out proof that the surrogate endpoint utilized in Elevidys trials can be “moderately prone to predict a drug’s meant scientific profit.” A 3rd dying has now occurred in a scientific trial utilizing Sarepta’s similar platform expertise that the FDA swiftly withdrew its approval of on July 18, 2025. The authors bemoan the FDA’s request that Sarepta “cease cargo of Elevidys due to the current deaths,” describing this as “one other grief.”

These within the MS group, which my group represents, are well-acquainted with many forms of grief as properly, as we grieve the numerous “issues” that MS, additionally a progressive and incurable illness, has taken from us. Nevertheless, I don’t imagine that the MS group would profit from an approval like Elevidys. These with MS and those that love them have greater than sufficient grief from what this MonSter of a illness has taken from us. We don’t want a “remedy” that can give us much more causes to grieve like Elevidys.

— Kaylin Bower, founder and government director of On a MiSsion for A number of Sclerosis

The response

Kudos to the 2 girls who wrote this text. I’m sufficiently old to recollect the polio epidemic of 1953 and the horrors it wrought on my household and pals. I escaped, fortunately. The purpose is somebody needed to take the primary polio shot (sure, shot, not sugar dice), not understanding for certain the result. The place would we be with out that willingness with regard to polio?

Early organ transplants have been an journey into the unknown, with many failures and deaths. Suppose Christiaan Barnard in 1967 with the primary coronary heart transplant, not all that way back, and now the unbelievable successes of organ transplant, nearly unbelievable. Suppose Leonard Bailey in 1984 and 1985 with the primary human toddler coronary heart transplants.

The moms who wrote this text are extremely brave in that they have been prepared to attempt to give their little one an opportunity to possibly not wind up as earlier youngsters did, understanding full properly the therapy could fail. We should not let forms, politics, cash, failure, errors, and even jealousy stifle those that dive into the seemingly unattainable. We might by no means have made it to the moon and the house station if we had. God bless these sufferers and their households, in addition to the researchers and docs who take care of them.

— Warren Ellison, M.D., retired

The story

“My mom refused therapy for her breast most cancers. Her docs ought to have revered her alternative,” by Pleasure Lisi Rankin

the response

It’s now 50 years since I used to be in medical faculty. As a hospital and community-based household doctor and geriatrician, I usually noticed firsthand the denigration by nearly all of my colleagues of sufferers and their households whose selections have been maligned and ignored, with incalculable unnecessary struggling the consequence. Each time I might, I stepped into that breach on the facet of these whose irreducible struggling required doing so. A number of the most humbling and significant work of my career. Primum non nocere?

— Barry Farkas