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‘Right to Try’ bill will protect public health

Echoes of AIDS era seen in fight to access investigational drugs

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(Photo by Pöllö; courtesy Wikimedia Commons)

At the height of the AIDS epidemic 25 years ago, only those lucky or well-connected enough had the opportunity to enroll in clinical trials that offered them hope for treatment, when they otherwise had none. But the widespread, unrelenting outcries of AIDS activists like myself spurred the Food and Drug Administration (FDA) to offer patients “expanded access programs” for a few drugs that were nearing formal approval and provided hope to AIDS patients.

Today, the voices of patients and advocates are needed again to give the terminally ill the chance to try to save their own lives.

Recently, the “Right to Try” bill unanimously passed the Senate with full bipartisan support. Now it awaits action in the House as S. 204. The bill codifies a right AIDS patients first demanded a quarter-century ago. It allows people with terminal illnesses access to investigational treatments that meet FDA safety standards but have not completed the arduous efficacy trials FDA requires for marketing. While 38 states have passed Right to Try bills, federal legislation is still needed to protect doctors from prosecution by FDA.

Other countries have more flexible regulatory policies. France’s lenient regulations allow 12,000 French patients access to investigational drugs every year. In the U.S., with five times the population of France, fewer than 2,000 per year make it through FDA’s complicated, lengthy, and expensive application process. A terminal patient is 30 times more likely to get investigational drugs in France than in the U.S. These figures belie FDA claims that the agency meets all needs for early access.

Current FDA application procedures create almost insurmountable obstacles for Americans trying to access investigational treatments. In desperation, many are driven to seek treatment abroad or try underground drugs that are useless, fraudulent or dangerous.

We’ve seen this before. While FDA did reluctantly begin offering expanded access programs during the AIDS epidemic, FDA’s foot-dragging spurred the growth of an AIDS drug underground that ensnared thousands of hapless patients. The award-winning film “Dallas Buyers Club” dramatizes patients’ desperation and heroism, though it downplays the dangers of underground drugs. When stories in the San Francisco papers forced FDA to test a knockoff of the drug DDC, its dosages were found to be inaccurate, which made them dangerous. Some samples contained no actual DDC, while others were adulterated. An activist friend who took another underground drug, trichosanthin, went into anaphylactic shock, almost killing him. Many of the sick grew worse experimenting with underground panaceas. FDA turned a blind eye to the buyers clubs because they provided a convenient safety valve that reduced community pressure on FDA to speed approval of legitimate pharmaceuticals.

Under mounting duress, the agency did grant early approval to protease-based antiretroviral drug cocktails. These quickly reduced AIDS deaths from more than 48,000 in 1995 to about 35,000 in 1996. By 2015 deaths had dropped to about 6,700. It is almost forgotten that AIDS activists and their doctors dragged FDA kicking and screaming into early approval. FDA proposed instead a scheme for “large simple trials” that could have delayed full approval several years. Such a delay would have cost tens of thousands of lives. Ironically, the AIDS activists who targeted FDA saved the agency from a catastrophic mistake it was dead set on making.

The dilemma of Americans denied access to investigational drugs is not peculiar to AIDS patients of a bygone era. Today’s patients with terminal cancer and rare diseases too often find they must leave America to try the newest treatments, if they can afford to leave. Even the prominent and highly educated are driven to try ineffective or dangerous remedies, as was the revered Coretta Scott King before her 2006 death in Mexico. America needs to make the right to try investigational drugs a civil right for all dying patients. Indeed, the right to try is part and parcel of the right to life.

FDA’s mission to protect public health would have been better served by respecting the rights of AIDS patients. These patients were at death’s door and only wanted a chance to live. Giving them that chance would have reduced the very real perils of underground knockoff drugs. But the FDA bureaucracy prioritized guarding its regulatory turf above respecting patients’ freedom to choose. Freedom won that time thanks to AIDS activists’ determination, but its victory is not assured. To ensure patient freedom now and in the future, Congress must pass Right to Try.

 

James Driscoll, Ph.D., a longtime AIDS activist, was an early leader in the fight for access to AIDS drugs. He is currently Healthcare Advisor to Liberty Education Fund.

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The latest Supreme Court case erasing LGBTQ identity

Chiles v. Salazar a major setback for movement

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(Washington Blade photo by Michael Key)

In its recent decision in Chiles v. Salazar, the U.S. Supreme Court invalidated Colorado’s law prohibiting licensed counselors from engaging in efforts to change the sexual orientation or gender identity of minors. The decision, which puts into question similar laws in 22 other states, relied on the First Amendment to hold that the law violates counselors’ free speech rights. But the decision also strikes a blow against LGBTQ dignity, a point the court’s opinion does not even address.  

The eight-member majority, which included Justices Elena Kagan and Sonia Sotomayor, who usually side with LGBTQ groups, justified its reasoning by suggesting that the law was one-sided: it permitted treatment that affirms LGBTQ identity but forbade treatment that seeks to change it. But the law is one-sided, as Justice Ketanji Brown Jackson’s lone dissent pointed out, because the medical evidence only supports one side: reams of research show that “survivors of conversion therapy continue to suffer from PTSD, anxiety, and suicidal ideation.” And major medical associations all agree, no evidence demonstrates the efficacy of conversion efforts. This isn’t surprising. Medicine often take sides — some treatments work, and some don’t.

But particularly concerning is the vision of LGBTQ identity that undergirds the majority opinion when compared to the dissent. Justice Jackson’s dissent explains that LGBTQ identity is simply “a part of the normal spectrum of human diversity” — not something to be “cured.” By contrast, for the majority, how best to help LGBTQ minors is “a subject of fierce public debate.” That can hardly be the case if LGBTQ identity stands on equal ground with straight, cisgender identity, or if LGBTQ people are as deserving of safety, rights, and dignity.

Indeed, the LGBTQ rights movement only began in earnest when advocates in the 1960s decided to end the “debate” over gay identity. Until then, community leaders would routinely cooperate with psychiatrists who were interested in researching homosexuality as a medical condition. A new generation of activists, led by Frank Kameny, a key movement founder, began arguing that this got the issue upside down: Rather than wondering if they could be “cured,” LGBTQ people had to assert a right to their identity. As Kameny put it—“we have been defined into sickness.” Only once the case was made that it was society that had to change, and not LGBTQ people, could LGBTQ consciousness, LGBTQ pride and LGBTQ rights develop. Their activism led to the first Pride parade in New York, and the official declassification of homosexuality as a disease in 1973. 

The Supreme Court’s conservatives don’t just want to reignite this half-century old medical “debate”; they also treat medical claims that undermine LGBTQ identity very differently from those who support it. Last year, in an opinion backingTennessee’s law that banned gender affirming care for minors, the court sympathetically marched through the reasons Tennessee offered for “why States may rightly be skeptical” of such care, and cited three times, in some detail, to “health authorities in a number of European countries” (that is, some Nordic countries and the UK) that had curbed pediatric care. It failed to mention that most of Western Europe and every major American medical association provides access to this care.

In Chiles, by contrast, the court cites none of the evidence that Colorado amassed that conversion therapy harms LGBTQ children. None of the countries that the court had invoked to justify anti-trans policies allow conversion therapy in their health care systems (indeed, one of them criminalizes such practices). So rather than cite medical evidence, the court simply asked — why trust medical evidence at all? “What if,” asks the court, “reflexive deference to currently prevailing professional views [does] not always end well?” and cites an infamous 1927 Supreme Court case, Buck v. Bell.

In Buck, the Supreme Court embraced eugenic reasoning, backing a eugenic state law that allowed the sterilization of individuals with mental disabilities, on the grounds that such disabilities were hereditary. As Justice Oliver Wendell Holmes opined, “three generations of imbeciles are enough.” Look at what happens when we listen to medical expertise, today’s court seems to say, as an excuse to disregard the LGBTQ-affirming medical evidence they don’t like.

But the court has missed the key lesson of Buck. The law at issue in Buckdiscriminated against a certain group, seeking, through sterilization measures, to erase it from existence. Indeed, LGBTQ people (whom doctors of the day would have referred to as sexual “inverts”) were exactly the kind of people that the eugenic program of Bucksought to eliminate. Conversion therapy seeks similar erasure.

The lesson of the 1960s LGBTQ rights movement remains as relevant today as it was then. Without an unapologetic LGBTQ identity, LGBTQ Pride, LGBTQ rights and the LGBTQ movement itself can all founder. By supporting only the anti-LGBTQ side in this medical saga — and by suggesting that LGBTQ existence is subject to medical debate at all — the court is reaffirming, rather than repudiating, minority erasure.


Craig Konnoth is a professor of law at University of Virginia School of Law.

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Response to a personal attack against me

Writers should stick to facts and reason

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I was disappointed when the Blade didn’t publish my response to a personal attack on me in a column by Hayden Gise, in last week’s print edition. They did publish it online. To be clear, I have no problem with people disagreeing with my columns and opinions. That is absolutely fair. But when they get into personal attacks, it often means they don’t have enough to say about the ideas they are trying to criticize. 

In a recent column ‘Why the Democratic Socialists of America are right for D.C.,’ the author decided to attack me personally. Here is the response I wrote to her column: 

“I am responding to a column by Hayden Gise who says in her column she is a transgender, lesbian, Jewish, Democratic Socialist, and supports having the Democratic Socialists of America (DSA) in Washington, DC. She is definitely as entitled to her view on this, as I am to mine. However, I was surprised she clearly felt it important to use the column to attack me personally, without even knowing me. What she didn’t do is respond to the issues in the DSA platform I wrote having a problem with, and which I asked candidates endorsed by the DSA to respond to. 1. Are they for the abolishment of the State of Israel? 2. What is their definition of a Zionist? 3. What is their definition of antisemitism? 4. Will they meet with Zionist organizations? 5. Do they support BDS? One needs to know when a candidate claims they are only a member of the local DSA, according to the DSA bylaws no person can be a member of a local DSA without being a member of the national organization. So Hayden Gise has a little better idea of who I am she should know: I was a teacher and a union member. I worked for the most progressive member of Congress at the time, Bella S. Abzug (D-N.Y.), and supported her when she introduced the Equality Act in 1974, to protect the rights of the LGBTQ community, and have fought for its passage ever since. I have spent a lifetime fighting for civil rights, women’s rights, disability rights, and LGBTQ rights. I have no idea what Hayden Gise’s background is, or what her history of working for the causes she espouses is. But I would be happy to meet with her to find out. But she should know, I take a back seat to no one in the work I have done over my life fighting for equality, including economic equality, for all. So, I will not attack her, as I don’t know her, and contrary to her, don’t personally attack people I don’t know much about. 

“I have, and will continue to attack, what the government of Israel is doing to the Palestinian people, and now to those in Lebanon and Iran. I will also attack the government of my own country, and the felon in the White House, and his sycophants in Congress, for what they are doing to our own people, and people around the world, and will continue to work hard to change things. However, I will also continue to stand for a two-state solution with the continued existence of the State of Israel, calling for a different government in Israel. I also strongly support the Palestinian people and believe they must have the right to their own free state.”

I have not heard from Gise, but I hope she knows that since she wrote her column indicating her support for Janeese Lewis George for mayor, her preferred candidate has attended a birthday party to celebrate a person who still refers to gay people as ‘fags.’   

We should not personally attack people we don’t know as a way to criticize their views on an issue. Once again, I have no problem with people disagreeing with what I write, and having the Blade publish those contrary columns. But a plea to all who disagree with any columnist, or story: disagree with the issues and refrain from making personal attacks on the writer. That actually takes away from whatever point you are trying to make. 


Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist. 

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Science said stop; the Supreme Court said no

What Chiles v. Salazar means for LGBTQ health

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(Washington Blade file photo by Michael Key)

Imagine if researchers found that coffee drinking increased your risk of death by more than 50%. The public health response would be immediate – regulations, warnings, a swift mobilization of policy to match the evidence. We would act, because protecting people from documented harm is what evidence-based policy exists to do.

The same logic is why Colorado banned conversion therapy. The science was clear: research from The Trevor Project and others shows that exposure to conversion therapy increases suicidal ideation among LGBTQ+ youth, and more than doubles suicide attempts for transgender youth. Every major medical organization in the country – the American Medical Association, the American Psychological Association, and the American Academy of Pediatrics – has condemned the practice. 

Colorado looked at the evidence and did what public health is supposed to do. It intervened. 

On March 31, 2026, the Supreme Court struck down that intervention 8-1 in the Chiles v. Salazar case, ruling that conversion therapy is protected speech.

This decision should alarm anyone who believes that science has a role in protecting human lives. The court did not dispute evidence. It did not produce contradicting research or question the methodology of the studies Colorado relied on. Instead, it decided that the ideological underpinnings of conversion therapy deserve more constitutional protection than the children being harmed by it. In doing so, it severed the fundamental link between what science tells us is dangerous and what the law is willing to prohibit. 

That severance has consequences far beyond Colorado, as Supreme Court Justice Ketanji Brown Jackson noted in her dissent. More than 20 states and Washington, D.C. have enacted conversion therapy bans. The court majority’s reasoning – that regulating talk-based practices constitutes censorship – hands challengers a blueprint. The scientific consensus that built those protections did not change on March 31, but its power to hold them in place did.

For LGBTQ+ public health researchers like us, this ruling is a reckoning. And a personal one. Both of us came to public health because it offered a way to ask questions that matter: How can we help people live safe, healthy, and happy lives?

As a Ph.D. student and an assistant professor focused on LGBTQ+ health, we have been energized by the possibility that rigorous research could inform policies that protect LGBTQ+ people. The Chiles v. Salazar ruling forces us to recognize something uncomfortable: the possibility of research driving policy is real, but it is not automatic. Evidence reaches policy only when researchers advocate to put it there. As it turns out, scientific evidence itself is not enough. 

This means the work of LGBTQ+ health researchers cannot stop at the journal article. It has to extend into the spaces where policy is actually made and public opinion is actually influenced. Researchers must work alongside educators, communicators, and community organizers to make evidence impossible to ignore or misrepresent. 

As Sylvia Rivera observed in 1971, “our family and friends have also condemned us because of their lack of true knowledge.” More than 50 years later, misinformation about conversion therapy, gender-affirming care, and LGBTQ+ health still fills the gap that researchers leave when they stay silent.

We also want to say this directly to LGBTQ+ young people: Science has not abandoned you. The evidence of your worth, your health, and your right to be protected is overwhelming and it is not going anywhere. The researchers, clinicians, and advocates who built that evidence are still here and still working to ensure it translates into the protection you deserve. 

The Chiles v. Salazar ruling is a serious setback. But it is not the end of the argument.

Science has shown us how conversion therapy causes harm. It has shown us clearly, repeatedly, and with the backing of every credible medical institution in the country. The Supreme Court chose to look away. The only response to that is to make looking away harder. To build a public, cross-sector, science-informed movement that refuses to let evidence be sidelined when lives are on the line.

The evidence is on our side. Now, we have to make sure it counts.


Vincenzo Malo is a Health Services Ph.D. student at the University of Washington’s School of Public Health who studies affirming health systems. Dr. Harry Barbee is an assistant professor in the Johns Hopkins Bloomberg School of Public Health whose research focuses on LGBTQ+ health, aging, and public policy.

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