First Opinion is STAT’s platform for attention-grabbing, illuminating, and provocative articles concerning the life sciences writ massive, written by biotech insiders, well being care employees, researchers, and others.
To encourage sturdy, good-faith dialogue about points raised in First Opinion essays, STAT publishes chosen Letters to the Editor acquired in response to them. You possibly can 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 assist 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 needs to be simpler to offer. My schizophrenic grownup son misplaced his life due to this sickness. He by no means accepted or had any perception into his analysis and persistently refused all remedy for it. When confronted with a most cancers analysis in his 40s, his paranoia concerning the medical occupation stored him from in search of remedy that would have saved his life. Since he lived in one other state, we had no recourse to pursue guardianship or any pressured remedy for our son. We’ll 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 by with the sources, infrastructure, and coverage wanted to make this work as a result of safer, more healthy communities rely on it.” This can be a fantasy as a result of he doesn’t care about safer, more healthy communities or folks in want. He simply needs to warehouse these folks, so others will not be inconvenienced. I can’t think about something he has carried out 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 folks with critical psychological sickness. As somebody with psychological sickness who has skilled and noticed coercive psychiatric programs, I have to reply.
Lakhan argues that folks like his brother are “trapped” by mind illness and needs to be forcibly handled, even in opposition to their will. However what he describes is just not compassion, it’s management. Framing psychiatric lock-up as equal to treating somebody for a stroke obscures a protracted, brutal historical past of pathologizing folks’s ache and stripping away their autonomy within the identify of remedy. It additionally ignores that folks with psychological sickness, particularly unhoused, poor, and racialized folks, are routinely criminalized, abused, and silenced in institutional settings.
Nonetheless, I perceive Lakhan’s urge to assist. A number of years in the past, a beloved certainly one of mine expressed a need 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 assumed. However they had been rapidly institutionalized, even with out insurance coverage to cowl their very costly keep. After they obtained out, they described to me the horrifying remedy they acquired. Employees advised them to hope their psychological sickness away. It took days longer than it ought to should obtain much-needed psychiatric medicines. Group “remedy” classes had been poorly run and deeply stigmatizing. The one factor really supplied was a lack of autonomy, not actual care, however management. That’s not remedy. That’s survival beneath duress. Worse, racism and homophobia had been rampant. My good friend was queer and didn’t really feel secure in that area.
I nonetheless don’t know what I’d do in that scenario once more; I used to be scared. However I do know I’d not drive them again into a spot like that. I perceive the heartbreak of watching somebody you like spiral. However compassion can not imply locking folks up as a result of we discover their struggling uncomfortable. We should battle for care that heals with out cages, and assist that doesn’t require surrendering one’s rights. Psychological sickness is just not against the law. And compelled remedy is just not care.
— Jacob Shomali
the response
I’ve represented folks with psychiatric disabilities for over 40 years. I sympathize with Dr. Lakhan, however he understandably solely sees by 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 exterior, or been forcibly held all the way down to be injected. I’ve by no means met a shopper 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 folks, however a substantial phase of persons are made to take health-threatening medicines that really don’t assist their circumstances. My purchasers get diabetes and achieve enormous quantities of weight on Zyprexa. For the folks it helps, it’s value 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 had 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 all the time asks physicians for extra, extra, extra,” by Cara Poland
The response
This was a beautiful article. I see medical doctors talking about stability, disabilities, caregiving, and self-care very occasionally, and the most effective physicians burning out of medication properly earlier than their time. I lived with persistent ache by most of my medical coaching, and I assumed this was the ceremony of passage. It took me years to appreciate that it was the system that was flawed. It creates medical doctors who doubt, dismiss, and, worse but, gaslight their sufferers once they’re at their most weak. We lose many physicians totally 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 carry extra medical doctors in appears to be to make medical faculty extra accessible. The larger query is, how will we preserve them there?
— Shimi Sharief
the story
“We’re moms of Duchenne sufferers. Latest 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 totally”; “to maintain and multiply progress”; and to not be on a “seek for absolute security ensures,” largely with reference to Elevidys.
Nobody is asking the FDA to “take away threat from the equation totally” or to embark on a “seek for absolute security ensures.” Quite, these affected by devastating progressive, incurable ailments are solely asking that the FDA fulfill its acknowledged mission by “defending and selling public well being by guaranteeing the security and efficacy of human medication [has been abbreviated],” which sadly doesn’t seem to have occurred within the case of their Elevidys approval. The Elevidys approval was not really useful by the FDA Evaluation 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” commonplace 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 Scientific Evaluation Staff particularly didn’t discover proof of efficacy for Elevidys.
Tragically, it seems these sufferers assumed the entire threat with out proof that the surrogate endpoint utilized in Elevidys trials can be “fairly more likely to predict a drug’s supposed medical profit.” A 3rd dying has now occurred in a medical trial utilizing Sarepta’s identical platform know-how 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 neighborhood, which my group represents, are well-acquainted with many sorts of grief as properly, as we grieve the numerous “issues” that MS, additionally a progressive and incurable illness, has taken from us. Nonetheless, I don’t imagine that the MS neighborhood 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 govt 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 buddies. I escaped, fortunately. The purpose is somebody needed to take the primary polio shot (sure, shot, not sugar dice), not realizing for positive the result. The place would we be with out that willingness with reference to polio?
Early organ transplants had been an journey into the unknown, with many failures and deaths. Assume Christiaan Barnard in 1967 with the primary coronary heart transplant, not all that way back, and now the unimaginable successes of organ transplant, virtually unbelievable. Assume 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 had been keen to attempt to give their youngster an opportunity to possibly not wind up as earlier kids did, realizing full properly the remedy could fail. We should not let paperwork, 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 area station if we had. God bless these sufferers and their households, in addition to the researchers and medical doctors who take care of them.
— Warren Ellison, M.D., retired
The story
“My mom refused remedy for her breast most cancers. Her medical doctors 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 typically noticed firsthand the denigration by nearly all of my colleagues of sufferers and their households whose selections had been maligned and ignored, with incalculable pointless struggling the consequence. Each time I might, I stepped into that breach on the facet of these whose irreducible struggling required doing so. Among the most humbling and significant work of my occupation. Primum non nocere?
— Barry Farkas
