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Proposed Medicaid rule may hurt people with HIV

A freeze on drug development would be a crushing blow

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We’re fortunate to exist in a world where it’s possible to live for a long time with HIV. Medical science has made astounding progress since the 1980s, when a positive diagnosis was considered a death sentence. Queer activism helped bring about the shifts in policy and attitude that made this success possible.

But our job isn’t over yet.

HIV isn’t spread evenly across the United States. In urban areas with high poverty, it’s as prevalent as it is in low-income countries with generalized HIV epidemics, like Ethiopia and Burundi. This means that almost 40% of Americans with HIV get their health coverage through Medicaid, the government insurance plan for low-income people. And recently proposed changes to the program could halt future progress toward finding a cure.

Under the current Medicaid Drug Rebate Program, Medicaid receives a sizeable manufacturer rebate on brand-name drugs — calculated in part based on either 23.1% off the average price of the drug, or the best price available to another purchaser if that discount is higher.

But now, the Centers for Medicare & Medicaid Services (CMS), the federal agency that runs Medicaid, has proposed a new rule. It would require calculating a medicine’s best price by stacking the rebates and discounts on a single unit of drug that a manufacturer provides to different eligible purchasers.

Due to the interplay with other recent changes to Medicaid, in some cases, the total markdown could exceed 100% of the average price of the drug — meaning manufacturers would be forced to effectively sell the medications at a loss to Medicaid.

This could mean trouble for drugs whose largest market is Medicaid, like those that treat HIV. If manufacturers and their investors decide that it’s no longer financially viable to make drugs that primarily serve disadvantaged patients, then those medications might not be developed at all.

That’s concerning, given that many groundbreaking HIV therapies stemmed from private sector research and development. And with research inching ever closer to a cure, a freeze on HIV drug development would be a crushing blow to those of us living with the disease.

The proposed rule change also threatens the search for a cure with policies that target cell and gene therapies, areas in which scientists have recently made promising HIV-related breakthroughs. When cell and gene therapies come to market after years of research, they can often have high up-front costs — sometimes more than $1 million per patient. That’s in part because the field is so cutting edge and the therapies deliver long-term benefits, and in part because research failures in drug development are far more common than successes.

One CMS policy change would require manufacturers to report their research and development costs for specific high-price medicines to the agency. The government could make such information public, and use it to challenge drug prices. In addition, the rule proposed to specifically target accelerated approval drugs, a pathway that has allowed many patients with HIV/AIDS early access to lifesaving treatments.

The problem is that for every drug candidate in clinical trials that succeeds, nine fail. Sometimes they fail after years of research and hundreds of millions of dollars invested. To keep  the research money flowing, that one success needs to make up for the cost of the nine that washed out.

If Medicaid drives drug mandatory rebates so low that companies can’t recoup their investments, it will discourage them from pursuing the most cutting-edge avenues of research — and put some of them out of business. Biotech investors will abandon gene therapy and seek out more stable markets, and HIV research will suffer. Ultimately, patients living with HIV who rely on Medicaid will miss out on potential cures that never get developed. They may also lack access to therapies that do get created, given that the companies behind them could pull out of the Medicaid market altogether.

Forty percent of Americans living with HIV are Black, and 63% are gay and bisexual men.

As a queer Black man with HIV myself, I know all too well how devastating it is to receive that diagnosis, especially when you’re underinsured and living in poverty. But I also know that effective treatment can vastly improve quality of life. Without the sacrifices and the activism of those who came before us, HIV might still be a death sentence.

It’s up to us to continue the fight now. Our community deserves a shot at a cure. CMS officials urgently need to reverse course on this disastrous proposal. And if they fail to do so, it’s incumbent on HIV activists to push for the federal government to adopt policies that support affordable HIV treatments and research funding.

Guy Anthony is the president and CEO of Black, Gifted & Whole.

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Opinions

Supreme Court ruling on trans athletes is a public health story

Justices label an entire group as ‘lesser’

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(Washington Blade file photo by Michael Key)

On June 30, the Supreme Court ruled, 6-3 that states may bar transgender girls and women from girls’ and women’s sports teams. Justice Brett Kavanaugh wrote that states may keep these teams for “biological females” and set eligibility by “biological sex.” The country will now spend days arguing about fairness on the field. We’ll debate race times, records, and who has earned a place on the roster.

I want to redirect this conversation, because I study something different and because the frame we’ve settled on misses the something important. 

I’m a public health researcher. My work focuses on how the conditions people live under get into the body and influence health over a lifetime. I’m talking about conditions such as laws, policies, and the everyday climate of acceptance or rejection. 

Two features of this ruling deserve more attention than the sports fight is giving them: the lifelong costs even a “narrow” decision sets in motion, and the question the Court declined to decide.

Start with how a ruling like this reaches the body, because that pathway is what makes this a public health story. My area of research has a name for what laws like this do: structural stigma. It’s the way statutes and court rulings can mark an entire group as lesser, and in doing so become a chronic stressor for every member of that group. 

The overwhelming majority of transgender kids will never compete for a state title. They still learned, from the highest court in the country, that their belonging is conditional. The stress that follows from that lesson is associated with higher rates of depression, anxiety, and poorer health across LGBTQ populations. A consistent finding in this literature is that social acceptance can disrupt such harmful trajectories. But this ruling pushes the country the other way.

I want to emphasize that the question of fairness is important, and the girls and women who raise it deserve to be heard. But the ruling does not resolve this question. It flattens it.

The science on athletic performance and gender transition is truly complicated and individual. It varies by sport, by person, by age, and by life circumstance. The Court grounded its decision in biological sex and then declined to reckon with what biology shows. The West Virginia teenager at the center of the case has been on puberty blockers since before male puberty began. The advantage the law claims to police never developed in her. A rule that treats her like an adult athlete disregards biology.

Here is the part a policy-minded reader should pay attention to. For decades, the central legal question about transgender Americans has been this: When the government treats transgender people differently, how good does its reason have to be? Courts don’t judge all discrimination in the same way. If a law sorts people by race or sex, the state must provide a strong justification, and many such laws fail. But if a law tries to draw an ordinary distinction, like who qualifies for a license, judges tend to wave it through as long as there’s a reasonable purpose. Whether a law singling out transgender people gets the skeptical look (what lawyers call heightened scrutiny) or the easy pass has not been settled. And this ruling, despite its subject, still did not settle it.  

How did the Court avoid the question its own case raised? Following last year’s decision in Skrmetti (the gender-affirming care case), the Court described these laws as drawing lines by biological sex, not transgender status. Courts endorsed sex-separated teams long ago; separate teams are the reason girls’ sports exist. So a law framed as a “sex” line lands on ground the courts have already approved, while a “transgender” line would have forced the choice between the skeptical look and the easy pass. The Court chose the frame that let it stay silent.

That silence creates exposure for transgender people – and I mean that word the way my field of public health uses it, for a condition that puts a whole population at risk. The same unanswered question now hangs over health care, employment, identification documents, public accommodations, and every domain where the level of scrutiny is the whole ballgame. And the Court read Title IX, the federal law banning sex discrimination in schools, through the same lens: “biological sex,” full stop. Advocates are right to see protections far beyond sports as newly vulnerable.

This is where my own research makes me most uneasy. I study LGBTQ adults in their 60s, 70s, and 80s, who came of age in a far more hostile America. Their lives show that the cost of stigma accumulates. Chronic stress works its way under the skin and surfaces years and decades later. Researchers see these deleterious outcomes in mental health, in physical health, and in emerging research like my own that explores the aging brain. So we should understand this decision for what it is: a long-term health decision the country is making on behalf of a generation of children.

Practically, the ruling compels no state to do anything. It tells the more than two dozen states that have passed these bans that they stand on solid ground, and it sends the rest of the fight back to statehouses and school boards, where trans youth and their families often hold little power. The ruling arrives just over a year after the Court let states ban the medical care many of these same young people depend on. Each law is a single stressor. Together they are a dangerous environment.

We know what protects these children. Acceptance, inclusion, and the dignity of being treated as though they belong. The Court made all three harder to offer, and left open the question that determines how much harder it can get. It is the children who needed those protections who will bear the cost, this sports season and for the rest of their lives. 


Harry Barbee, Ph.D., is an assistant professor at the Johns Hopkins Bloomberg School of Public Health where they study LGBTQ health, aging, and public policy.

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It’s good to see some justices standing up to Trump

But expanding the court is necessary to save our democracy

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(Photo by Fred Schilling; courtesy Supreme Court of the U.S.)

It was shocking to see some of the MAGA-loving majority on the Supreme Court actually voted against the felon in the White House a couple of times. Not surprisingly, Samuel Alito and Clarence Thomas were steadfast in their ultra-MAGA, outrageous views. They just want to help make Republican doctrine, which today means helping to make Project 2025 a reality, a success. They couldn’t care less about the Constitution. We can just imagine how they voted on the E. Jean Carroll case, where Trump has been trying to weasel out of his obligation to pay the woman he was convicted of committing sexual assault against. But we won’t know for sure since the Court simply denied hearing the case, so there was no recorded vote or dissent. 

On what was a simple case, the constitutional principle of birthright citizenship, Chief Justice John Roberts, Amy Coney Barrett, and Brett Kavanaugh, actually voted to uphold the Constitution along with the three liberal justices, Sonia Sotomayor, Elena Kagan, and Ketanji Brown Jackson. But even then, Kavanaugh was only halfway there. But as could have been predicted, Alito and Thomas voted the other way, and this time were joined by Neil Gorsuch. Then on the question of trans women playing sports on a women’s team, the vote was 6-3 against, and you can figure out who the three were who went against the felon, and supported the women. 

Interestingly, in the case of Mississippi and mail-in ballots, allowing those mail-in ballots to be counted up to five days after the election if they were postmarked by Election Day, Roberts and Coney Barrett went with the liberals. Once again, you knew before the vote where Alito and Thomas were, and in this case, they were joined by Kavanaugh and Gorsuch, trying to help Republicans steal the next election.

I have no love for Roberts, but it seems every so often he is trying to save his own reputation since all this is the Roberts court, as he is the chief justice. I have never known what to make of Coney Barrett, who has occasionally sided with the more liberal justices, to the consternation of Trump, who believed when he nominated her, she would always be with him. She mostly has, and he can be thankful she voted with the other slime bags, and granted him total immunity as president in the 2024 decision. In essence, placing him above the law. In so many ways the felon has acted using that immunity. We now see a blatant case of this with the release of his new financials, and his $2 billion windfall with crypto.  

Roberts nearly always votes with the Trump judges, but if there is a decision that is so obviously a gift to the felon, Roberts every once in a while could go with the liberal wing of the court. We need to remember he was appointed by George W. Bush. But again, this court will always be known as the Roberts court, the one that bowed down to the felon in the White House, and his fascist aids like Stephen Miller, and the author of Project 2025, Russell Vought, at OMB. 

So, what can we do to change this, and to fight back? The first thing is to elect a Democratic Congress in 2026, and then a Democratic president in 2028. Then those we elect will have to decide how to proceed. One answer to that question is simple. Vote to add more justices to the Supreme Court. That simply requires a bill to pass with a majority in both houses of Congress, and the president’s signature. To the surprise of many it has been done seven times since the court was created in 1789. There is no number of justices for the court stipulated in the Constitution. Yet it has remained at nine since 1869. Although that fix may sound easy if Democrats take over Congress and the White House, we must remember, Franklin Roosevelt tried in 1937 to expand the court by six justices to protect his New Deal programs. After a fight that lasted 168 days, the bill to do this was defeated. I fear any proposal to expand the court today, may actually have the same fate. There will be those who say it will divide the nation even further, and there will be a constant tit-for-tat on everything. The only way to win such a vote will be if enough people are convinced the felon and his gang of thieves, have so destroyed our democracy, that changing the court is a necessity if we are to save our democracy for the next 250 years. 


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

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When a church fears the rainbow

Puerto Rico pastor objected to Pride symbols outside congregation

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(Washington Blade photo by Michael Key)

There are moments when an incident stops being merely a local story and begins to reveal something much deeper. What happened on June 28 outside One Church, in Comerío, Puerto Rico, belongs in that category.

I do not know who painted the rainbow colors on the asphalt and on a roadside guardrail. I do not know what motivated them, and it is not my place to justify their actions. If someone believes a law was broken, there are authorities and legal mechanisms to address that. That is not the point of this reflection.

The point is the words that followed.

Hours after those colors appeared, Pastor Jorge J. Santiago Reyes went live on social media. He said he felt threatened. He described what happened as a physical attack against his church. He appeared angry and disappointed. He called those who painted the rainbow “cowards” and “charlatans.” He expressed frustration with the support that, according to him, the municipal government of Comerío has shown toward the LGBTQ community, and with those who support posts related to that community. He repeated several times that the people responsible had “crossed the line.” He ended his message by saying, “These charlatans have to be stopped.”

As I listened to his words, I stopped thinking about the paint.

I began thinking about fear.

There is one phrase the pastor repeated again and again: “They crossed the line.” Yet he never explained what that line was. If he was referring to a possible violation of the law, that is for the authorities to determine. If he meant respect for property, there are also procedures to deal with that. But when that line remains undefined and the message begins to associate a rainbow with a threat, the question changes. It is no longer only about a guardrail or a road. It becomes a question about what boundary, in the pastor’s view, was actually crossed.

Paint can be erased.

A brush can cover the asphalt and return a guardrail to its original color.

What does not disappear so easily is the meaning of those colors.

And perhaps that is where the real conflict begins.

It is significant that this happened precisely on June 28, the day when the LGBTQ community remembers a history marked by exclusion, violence, and the struggle for dignity. What represents memory, hope, and the possibility of living without hiding for millions of people was presented by others as a threat.

I do not know why someone painted that rainbow. I do not need to know in order to ask whether those were the words society should expect from a pastor.

A religious leader may feel hurt, frustrated, or angry. What he cannot forget is the responsibility that comes with every public expression. His words do not end when a livestream ends. They move beyond the space of his church, reach people who may never share his faith, and help shape the way others see those who think differently. When a pastor calls other people “charlatans” and “cowards,” says they “have to be stopped,” and turns a rainbow into evidence of an attack, he is no longer speaking only from frustration. He begins to build a discourse that can feed rejection toward a community far larger than the people responsible for that act.

There was another moment in the livestream that caught my attention. The pastor reminded viewers how much he has served Comerío, how much he has accompanied his community, and how much he has worked for it. I have no reason to question that service. I am sure many people can testify to the good he has done.

That is precisely why it was difficult to hear.

Pastoral vocation is not about reminding a town of everything one has done for it when conflict appears. Service does not lose its value when it goes unrecognized; it loses something when it becomes an argument to claim a moral position from which to speak down to others. A person who serves does so because that is the nature of the calling, not because that service grants authority to discredit those who think differently.

As a pastor, that part of the message left me deeply uneasy. Not because I expect ministers of God to be perfect. We are not. But because our words carry weight, we are called to speak with greater responsibility. Some expressions build bridges. Others raise walls. Some words invite encounter. Others end up justifying rejection.

The paint will disappear. A brush will be enough to cover the asphalt and return the guardrail to its original color.

The words will not disappear as easily.

They will remain recorded in a video, shared again and again on social media, and remembered by those who heard them. They will remain long after the last trace of paint has been erased.

When this episode is remembered, it probably will not be because of the rainbow that appeared outside One Church, in Comerío, Puerto Rico.

It will be because of the words a pastor chose to use when speaking about it.

And that difference changes everything.

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