Opinions
Proposed Medicaid rule may hurt people with HIV
A freeze on drug development would be a crushing blow

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 ā 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 ā 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 ā 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 ā 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.
Opinions
Keir Starmer has blood on his hands
British prime ministerās foreign assistance cuts will kill people with HIV

My name is Mijan. I’m a born and bred East Londoner, a child of immigrants, an ACT UP London/UK activist, and I live with HIV. ACT UP UK and our kin across the pond, ACT UP US, was founded to fight and champion rights of people living with and affected by HIV/AIDS. We are a global coalition that believes in Fund Healthcare Not Warfare, a transatlantic movement that demands global health justice and an end to military prioritisation over the health and wellbeing of human life. The threats we face are the same from funding cuts, state suppression, and queer erasure. U.S. or the U.K. we sing from the same hymn sheet: We will not stand by while our lives are at risk.
On April 8, eight of us ACT UP Activists disrupted Prime Minister Keir Starmerās Liaison Committee. We were peaceful and determined to execute our die-in. Security was almost as determined to make sure we didn’t. They strong-armed us out of parliament like we were a threat. We tried to begin our die-in, to make a statement for the lives at stake, but instead we were rammed out the revolving doors as we were leaving, which they ended up jamming and dumped on the stairs of Portcullis House. We made the best of a bad situation and laid on the dirty grounds ā because this is what democracy looks like in the U.K. when itās under attack.
Why were we there? Because we are scared and angry. Because we are regressing. Because AIDS cuts means death.
Keir Starmerās Labour government is enacting the most drastic reduction in U.K. AID cuts we have seen in many years, slashing it from 0.5 percent of gross national income to 0.3 percent by 2027. This is the lowest level of Official Development Assistance spending in years ā and itās being justified to increase defense spending. More missiles, fewer medicines. More tanks, fewer treatments.
Starmer, you justify this under the guise of “security” ā but whose security are you protecting? Itās not mine. I live with HIV, and Iām only alive today because of global health funding, funding that made treatment, programs, and vital research possible. Thanks to that support, HIV is no longer a death sentence for many of us. But thatās not the case for everyone.
Not everyone has the privilege of being born in countries like the U.K., where treatment is accessible and free. Many will die because of funding cuts. Many will lose loved ones. We will see HIV contraction rates rise. We will see preventable deaths increase.
Kier, what you are doing is wrong! What you are doing is horrible! What you are doing is deadly!
Don’t take my word for it. Listen to our world health experts. The World Health Organizationās Director-General, Tedros Adhanom Ghebreyesus, has warned that these cuts could cause over 10 million additional HIV infections and three million HIV-related deaths. A new modeling study published in the Lancet HIV by the Burnet Institute backs this up ā projecting a 24 percent reduction in international HIV funding by 2026 if current trends continue. Twenty years of progress in HIV treatment and prevention could be wiped out by a single budget.
Deplorable.
Is this what Labour stands for? I thought this party would fight for us.
HIV/AIDS disproportionately affects queer people and people of color ā already marginalized communities who are now being discarded. Labour was created by and for people who lived on the fringe of society, the little guy. Labour is meant to empower, support and protect the vulnerable, not sacrifice them. Labour is meant to listen to the people, not silence them and ram them out like cattle to slaughter. Labour should be ashamed. You are not for the people.
We were there for a reason. We were there because lives depend on it. We showed up because diplomacy failed. When we chose peaceful protest, we were met with aggression and suppression. Thatās what we need to talk about too. Because this isnāt just about foreign aid anymore ā this is also about our right to protest being attacked.
When activists are forced out of parliament for daring to peacefully protest against inhumane policies, it truly puts into perspective a dying democracy.
Democracy is no longer open to the people. Our ability to protest is now treated as a threat to power. Our democracy is under threat. And itās not just from Tory strongmen. Itās from the very party thatās supposed to be on our side.
This Labour government has abandoned its principles and has abused people’s trust. That it will turn its back on migrants, on the poor, on queer people, on disabled people, and now ā on people living with and at risk of HIV/AIDS. It is morally bankrupt.
Bombing your way to justice will not achieve equality. Ignoring a global health crisis and is not progressive. Get your priorities straight: Fund health care, not warfare. Invest in life, not death. Restore the 0.5 percent foreign aid commitment, and stop treating the most vulnerable lives on the planet as expendable.
Keir Starmer, you have blood on your hands.
You may have pushed us out of parliament, but we will not be silenced. We will be louder. We will be bolder. We will not let this die. ACT UP has always believed in one simple truth: SILENCE = DEATH.
Mijan is a pseudonym for an HIV-positive activist who believes that SILENCE = DEATH.
Opinions
Science must not be a weapon against trans people
HHS directive would fund studies on ādetransitionā among children

A concerning research directive is quietly circulating through the U.S. Department of Health and Human Services. The directive, issued in response to presidential Executive Order 14187, calls for the National Institutes of Health to fund studies focused on āregretā and ādetransitionā among children who have accessed gender-affirming care. It explicitly demands that researchers avoid āsubsidizing or incentivizingā such care ā language that is both vague and deeply ideological.
President Trumpās executive order, titled āProtecting Children from Chemical and Surgical Mutilation,ā was signed in January 2025 and frames all gender-affirming care for minors as inherently dangerous. It calls for an investigation into the ālong-term side effectsā of such care and restricts federal funding to any institution providing it. In effect, it lays the groundwork for a federally sanctioned research agenda that aims not to understand transgender health but to discredit it.
Behind the recent HHS memo lies a dangerous truth: The federal government is attempting to repurpose science as a tool for political ideology. If this directive proceeds, it will not only erode the credibility of public health research, but it will also put transgender lives at risk.
This warning is not hyperbole. The memo uses inflammatory language like āchemical and surgical mutilationā to describe standard gender-affirming treatments such as hormone therapy and surgery. These terms are not neutral. They are the rhetorical weapons of anti-trans movements, now embedded in federal policy language. Their use signals a chilling shift: science is no longer being asked to explore, understand, or improve lives. It is being asked to justify harm.
Letās be clear: Regret following gender-affirming care is exceedingly rare. Evidence suggests that the regret rate among individuals who have had gender-affirming surgery is less than 1%, compared to a surgical regret prevalence of about 14% among the general population. Moreover, studies have found that when transgender people report regret following gender-affirming surgery, it is often related to external factors like lack of support from family and peers.Ā
The evidence is consistent and overwhelming: gender-affirming care, including gender-affirming surgery, improves mental health, reduces suicidality, decreases substance use, and affirms a personās identity and autonomy. Thatās why the American Medical Association, the American Academy of Pediatrics, the American Psychiatric Association, and every major medical organization in the United States recognize the safety, efficacy, and medical necessity of gender-affirming care when provided in accordance with established guidelines.
And yet, this new directive demands the opposite. It explicitly instructs researchers to avoid using methods that āsubsidizeā or āincentivizeā transition ā a vague prohibition that could limit recruitment, constrain study design, and exclude institutions that provide care. It also bars federal funding to any site offering gender-affirming care to minors, ensuring that the very institutions with the clinical expertise and trust of transgender communities are excluded from the research altogether.
This is not how science works. It is how propaganda works.
There is no scientific integrity in a process that defines its conclusions in advance. There is no public benefit in research that singles out one of the most vulnerable populations ā transgender youth ā as the sole subject of scrutiny while erasing their overwhelmingly positive outcomes. There is no ethical justification for using federal funds to stigmatize identities and restrict medical freedom.
All aspects of transgender health ā positive, negative, and complex ā deserve rigorous scientific study. That is what good research does. It seeks truth through comprehensive, community-engaged inquiry. But this directive does not aim for understanding; it fixates exclusively on harm. By selectively funding studies on regret and detransition and explicitly discouraging research that might affirm or support transition, it transforms science from a tool of discovery into an instrument of ideological control.
The consequences of this directive are real. It will erode trust in health research, particularly among transgender people who already face systemic discrimination in medicine. It will chill academic inquiry, pushing researchers away from transgender health for fear of political reprisal. And it will feed a wave of state-level legislation banning gender-affirming care ā legislation that increasingly cites distorted or misrepresented science as justification.
This directive is not just an attack on trans rights. It is an attack on science itself.
We must respond with urgency.
First, institutions that receive NIH funding must speak out. Silence enables political interference to become normalized. Deans, department chairs, and ethics boards must draw a clear line: public health research cannot be allowed to serve discriminatory ends.
Second, scientific societies and journals must reaffirm their commitment to ethical, community-engaged, and evidence-based research on transgender health. This means actively promoting rigorous work that reflects the full complexity of transgender peopleās lives. Not just those experiences that fit a political narrative.
Third, Congress must exercise its oversight powers. Lawmakers should demand transparency around how and why this directive was issued and ensure that federally funded research respects both scientific standards and human rights.
And finally, the research community must organize. Transgender health researchers, bioethicists, and community partners need to work together to defend the autonomy of science and the dignity of research participants. This is not a moment for neutrality. It is a moment for moral clarity.
We are living through a time when transgender people are being targeted by laws, banned from public life, and erased from textbooks. Now, the very tools of science are being turned against them. If we donāt stop this weaponization now, the damage wonāt just fall on transgender communities; it will fall on all of us who believe in evidence, equity, and truth.
Harry Barbee, Ph.D., is an assistant professor at the Johns Hopkins Bloomberg School of Public Health. Their work focuses on LGBTQ+ health equity and public policy.
Opinions
D.C. leaders must show up for LGBTQ+ communities
Silence is not an option amid relentless attacks

At a time when D.C. and the LGBTQ+ community are under relentless attack, we cannot afford silence ā or inaction. The DC LGBTQ+ Budget Coalition, a grassroots alliance of more than 20 LGBTQ-led and LGBTQ-serving organizations and individuals, is calling on Mayor Bowser, the D.C. Council, and every level of D.C. government to act with urgency and purpose in this yearās budget process to invest in our community. Our lives, our futures, and our rights are on the line ā not just nationally, but here at home in the District. How D.C. as a city responds in the face of hate sends a powerful message to the rest of the country.
We formed this coalition because LGBTQ+ people in the District ā especially Black, Brown, trans, disabled, and low-income residents ā deserve more than token inclusion. We deserve policies, investments, and leadership that center our lived realities and deliver on equity. While Congress tries to strip D.C. of home rule and holds our budget hostage, our local government has the power ā and responsibility ā to lead.
We are not a performative alliance. We are a community-driven movement. From housing to healthcare to workforce development, we believe budgets are moral documents ā and D.C.ās budget must reflect the values of equity, justice, and liberation.
National Context Demands Local Action
Just this year, members of Congress introduced damaging legislation to reverse D.C.ās home rule, stripping District residents of the fundamental rights of self-governance enjoyed by their own constituents. Additionally, the White House seeks to rule over us by executive order, issuing edicts to overturn our laws. Adding further insult to injury, extremists in the House of Representatives are holding $1.1 billion of D.C.ās own tax revenue hostage to their radical anti-democratic agenda.
Moreover, this administration continues its assault on diversity, equity, and inclusion initiatives, undermining civil rights protections across the country. We are not simply witnessing bureaucratic shifts; we are standing at the edge of a cliff, staring down a coordinated rollback of the very protections our communities have bled to secure.
Veterans of past queer liberation fights remind us that weāve been here before. From the Lavender Scare to Stonewall to ACT UP, from the fight for marriage equality to the ongoing battle for trans rights, queer warriors have long known what it means to survive government neglect, societal backlash, and moral panic. Their testimonies warn us: This moment is severe. This moment is familiar. And this moment requires us to act.
These are not theoretical attacks. They are strategic, structural, and escalating. In this context, D.C. must serve as a model for sanctuary, resilience, and resistance. That means investing in communities ā not abandoning them.
We know that our local leadership has, at times, moved preemptively to comply with federal executive orders ā even when those directives run counter to our values. And while the mayor has publicly affirmed equity, housing, and inclusivity as core priorities, this moment demands more than words. We call on the mayor and District leaders to stand firm in those stated commitments and meet this moment with the clarity in the Districtās budget. D.C. must not be a conduit for federal overreach, but a bulwark against it.
Our FY26 Priorities
In this yearās budget, weāre calling for the D.C. government to protect targeted investments in:
ā¢ Public Health: Restore and expand local funding to fill the dangerous gaps left by federal cuts to HIV prevention and mental health services. Ensure culturally competent care for LGBTQ+ residents, especially those with disabilities and chronic health conditions.
ā¢ Employment and Economic Equity: Sustain and grow workforce development programs for trans and gender-diverse (TGD) residents. Expand partnerships with employers and support entrepreneurial training by and for the TGD community.
ā¢ Housing: Invest in long-term housing solutions, including for LGBTQ+ youth and seniors, and protect programs like Emergency Rental Assistance Program (ERAP) and Tenant Opportunity to Purchase Act (TOPA) that keep people residents housed.
ā¢ Safety and Community Support: Fund LGBTQ+ survivor shelters and IPV/SA services, ensure disability and language access, and streamline government grant processes for community-based organizations.
Weāve outlined these and other priorities in our full FY26 Budget and Policy Platform, recently delivered to the Mayor and D.C. Council. But we know that a letter alone isnāt enoughāwe must take action.
Weāre Organizing ā and Weāre Not Alone
In this past week, we launched a letter-writing campaign to mobilize D.C. residents to urge their Council members to prioritize LGBTQ+ budget needs. We are also releasing a citywide sign-on letter for partner coalitions and ally organizations to demand the same.
Our members are showing up at budget hearings, meeting with agencies, and organizing communities across all eight wards. And while weāre proud of the momentum, we need our community to join us. We need every resident, organization, and elected leader to get in this fight.
How You Can Get Involved
Hereās how you can join the movement:
ā¢ Individuals: Sign our Action Network letter to Council members and the Mayor.
ā¢ Testify or submit written testimony at budget hearings to uplift our priorities.
ā¢ Call and email your Council members ā demand full inclusion of LGBTQ+ needs in the FY26 budget.
Together, we can ensure that D.C.ās budget reflects the lived realities and urgent needs of LGBTQ+ communities across all eight wards.
The question before D.C.ās leaders is clear: Will you choose to look the other way or will you join us in taking action?
Heidi Ellis is coordinator of the DC LGBTQ+ Budget Coalition. Erin Whelan is executive director of SMYAL (coalition member).Ā
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