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AIDS groups stage White House protest

Obama, Hill Dems criticized over AIDS drug funding

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AIDS activists protest at the White House with empty pill bottles Wednesday. (Blade photo by Michael Key)

About 50 AIDS activists carried signs made with empty pill bottles in front of the White House Wednesday in a protest over what they say is a failure by President Obama and Democratic leaders in Congress to allocate emergency funds for the AIDS Drug Assistance Program known as ADAP.

The activists, led by the national AIDS advocacy groups Housing Works and AIDS Healthcare Foundation, said the pill bottles represent the more than 3,200 people in nine states currently on waiting lists to receive life-saving AIDS drugs.

“These are pill bottles that need to be filled with prescriptions,” said Christine Campbell, Housing Works’ vice president for national advocacy and organizing.  “Over 3,000 people are on these waiting lists. These represent lives,” She said.

Campbell and Michael Weinstein, president of AIDS Healthcare Foundation, called on the White House and Congress to immediately approve a supplemental funding allocation of $101 million, which they said was needed to eliminate the waiting lists before the end of the year.

Other groups that participated in the White House protest included ADAP Advocacy Association, Campaign to End AIDS, and Community Access National Network.

Organizers crafted the signs by attaching the pill bottles to poster boards to form words that spelled out the names of nine states with ADAP waiting lists and slogans such as “ADAP Saves Lives” and “Wait Lists = Death.”

As tourists and passersby stood on the sidewalk in front of the White House, several of the protesters spoke to a small crowd that gathered to observe the demonstration.

“I am one of those patients that are on these waiting lists,” said Rick Lanza, who traveled from Ohio to participate in the protest. “I have had medication through ADAP since 1997 and this year my medication has been cut off,” he said.

“Without these medications, I’m going to die, and I’m not ready to,” he said.

In a news conference on Tuesday, three AIDS patients joined Campbell, Weinstein and officials with other AIDS groups in describing their fears of contracting AIDS-related illnesses that could threaten their lives if waiting lists force them off their medications.

“I have no idea where I’m going to get my mediation in November,” said Jacksonville, Fla., resident Jeffrey Voyles, who told of how state officials informed him he would likely be placed on an ADAP waiting list.

“My [viral load] numbers have been undetectable since I’ve started the medication and right now I have a lot of fear about becoming resistant from the medications that I’ve been on for four years,” he said.

Voyles was referring to warnings by AIDS doctors that interrupting a regimen of anti-retroviral drugs that check the AIDS virus could lead to the virus becoming resistant to the drugs, making them ineffective when someone resumes taking them.

ADAP is part of the federal Ryan White CARE Act program. It operates in partnership with all 50 states, which share in meeting the cost of subsidizing drugs that could cost $10,000 or more for a patient each year. The program is aimed at low-income people who don’t have private health insurance or who are not eligible for government health programs like Medicaid.

State and federal health officials say the severe shortage in funding for the program is due to several developments, including the economic recession that has greatly curtailed revenue flowing into states. The number of people in need of the program has also shot up due to the success of the drugs, which are keeping most AIDS patients alive and relatively healthy.

The National Alliance of State and Territorial AIDS Directors, which conducts an annual assessment of state ADAPs, determined earlier this year that $126 million in federal supplemental funds was needed to eliminate the waiting lists. The Obama administration responded by allocating $25 million, a sum most AIDS groups say is inadequate.

With support from the White House, a House of Representatives appropriations panel approved a $50 million increase in the ADAP budget for fiscal year 2011.

But the Obama administration, House Speaker Nancy Pelosi (D-Calif.), and Senate Majority Leader Harry Reid (D-Nev.) have declined to back a Republican-backed bill in the Senate that calls for immediately transferring $126 million in unspent funds from the multi-billion dollar federal stimulus program to ADAP.

The Senate bill, the Access ADAP Act, was introduced by Sen. Tom Coburn (R-Okla.) and co-sponsored by four other Senate Republicans. No Democrats have signed on to the bill so far.

“There is a legislative solution that’s on the table today that Congress could act on before they adjourn,” said Weinstein in discussing the Coburn bill.

“The argument that this is not appropriate — the stimulus money — compared to all the things you’ve read about, all the pork that’s been thrown into that, it’s really an affront to people living with HIV/AIDS,” he said.

A number of AIDS groups and activists have expressed support for the bill as a one-time emergency measure to address the ADAP waiting lists.

“To me, shifting unspent stimulus funds over to ADAP seems like a practical solution to a most dire situation,” said Dan O’Neill, an official with D.C.’s Gay/Bi/Trans HIV Prevention Working Group. “Otherwise people will die.”

While agreeing that more funds are urgently needed for ADAP, other national AIDS groups have expressed disagreement over AIDS Healthcare Foundation’s sharp criticism of the Obama administration and Speaker Pelosi on AIDS issues, saying Obama and Pelosi have each taken action to boost overall AIDS funding and advance AIDS programs.

“Increased resources for HIV/AIDS care, treatment, prevention and research has been one of the Speaker’s highest priorities throughout her entire congressional career,” said Pelosi spokesperson Drew Hammill. “Since becoming speaker, discretionary funding for HIV/AIDS has increased by over $500 million.”

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Trans activists arrested outside HHS headquarters in D.C.

Protesters demonstrated directive against gender-affirming care

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(Photo by Alexa B. Wilkinson)

Authorities on Tuesday arrested 24 activists outside the U.S. Department of Health and Human Services headquarters in D.C.

The Gender Liberation Movement, a national organization that uses direct action, media engagement, and policy advocacy to defend bodily autonomy and self-determination, organized the protest in which more than 50 activists participated. Organizers said the action was a response to changes in federal policy mandated by Executive Order 14187, titled “Protecting Children from Chemical and Surgical Mutilation.”

The order directs federal agencies and programs to work toward “significantly limiting youth access to gender-affirming care nationwide,” according to KFF, a nonpartisan, nonprofit organization that provides independent, fact-based information on national health issues. The executive order also includes claims about gender-affirming care and transgender youth that critics have described as misinformation.

Members of ACT UP NY and ACT UP Pittsburgh also participated in the demonstration, which took place on the final day of the public comment period for proposed federal rules that would restrict access to gender-affirming care.

Demonstrators blocked the building’s main entrance, holding a banner reading “HANDS OFF OUR ‘MONES,” while chanting, “HHS—RFK—TRANS YOUTH ARE NO DEBATE” and “NO HATE—NO FEAR—TRANS YOUTH ARE WELCOME HERE.”

“We want trans youth and their loving families to know that we see them, we cherish them, and we won’t let these attacks go on without a fight,” said GLM co-founder Raquel Willis. “We also want all Americans to understand that Trump, RFK, and their HHS won’t stop at trying to block care for trans youth — they’re coming for trans adults, for those who need treatment from insulin to SSRIs, and all those already failed by a broken health insurance system.”

“It is shameful and intentional that this administration is pitting communities against one another by weaponizing Medicaid funding to strip care from trans youth. This has nothing to do with protecting health and everything to do with political distraction,” added GLM co-founder Eliel Cruz. “They are targeting young people to deflect from their failure to deliver for working families across the country. Instead of restricting care, we should be expanding it. Healthcare is a human right, and it must be accessible to every person — without cost or exception.”

(Photo by Cole Witter)

Despite HHS’s efforts to restrict gender-affirming care for trans youth, major medical associations — including the American Medical Association, the American Academy of Pediatrics, and the Endocrine Society — continue to regard such care as evidence-based treatment. Gender-affirming care can include psychotherapy, social support, and, when clinically appropriate, puberty blockers and hormone therapy.

The protest comes amid broader shifts in access to care nationwide. 

NYU Langone Health recently announced it will stop providing transition-related medical care to minors and will no longer accept new patients into its Transgender Youth Health Program following President Donald Trump’s January 2025 executive order targeting trans healthcare. 

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CMS moves to expand HIV-positive organ transplants

HIV/AIDS activists welcome potential development

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Earvin 'Magic' Johnson, right, and NMAC CEO Harold Phillips speak at the 2025 U.S. Conference on HIV/AIDS in D.C. (Washington Blade photo by Michael Key)

The Centers for Medicare and Medicaid Services is pushing forward a proposed rule that would make it not only easier for people with HIV in need to get organ transplants from HIV-positive donors, but also make it a priority where there was often a barrier.

The Washington Blade sat down with people familiar with this topic — from former heads of the Centers for Disease Control and Prevention, to HIV activists and to the first HIV-positive person to donate an organ — about what this proposed change could mean.

HIV is a virus that attacks the body’s immune system, particularly targeting the body’s T-cells, which makes it harder to fight off infection and disease. If left untreated, HIV can become AIDS. Without treatment, AIDS can lead to death within a few months or years. The virus is spread through direct contact with bodily fluids — often through sex, unclean needles, or from mother to baby during pregnancy.

According to HIV.gov, a website managed by the U.S. Department of Health and Human Services, approximately 1.2 million people in the U.S. were living with HIV in 2022. Of those 1.2 million, 13 percent don’t know they have it.

The virus disproportionately impacts men who have sex with men and people of color.

The CDC’s statistics show men are most affected, making up almost 80 percent of diagnoses, with gay and bisexual men accounting for the majority. Racial disparities also are present — Black people make up 38 percent of diagnoses. The World Health Organization estimates that around 44.1 million people have died from AIDS-related illnesses globally as of 2024.

Since the virus was first detected 45 years ago, scientists have been working on ways to treat and prevent its spread. In 1987, the first breakthrough in fighting HIV came as the U.S. approved the first HIV medication, AZT — marking the beginning of antiretroviral therapy. This medicine — and later descendants of it, like today’s widely prescribed Biktarvy — stop the HIV virus from reproducing and allow the body to keep its T-cells.

Then in 2012, another big step toward minimizing the scope of the potentially fatal disease came as the CDC approved the first HIV prevention medication, Truvada, more commonly known as PrEP. As of 2024, nearly 600,000 people in the U.S. are using PrEP, according to AIDSVu, which uses data from Gilead Sciences (manufacturers of Truvada and Biktarvy) and is compiled by researchers at the Rollins School of Public Health at Emory University.

The following year, in 2013, the HIV Organ Policy Equity (HOPE) Act was signed into law, enabling the use of organs from HIV-positive donors for transplants into HIV-positive recipients, overturning a 1988 ban.

There are an estimated 123,000 people waiting for organ transplants in the U.S. The number of HIV-positive people on that list is estimated to be smaller, harder to precisely quantify, but they are still in dire need.

A study from the New England Journal of Medicine, published in 2024, analyzed the outcomes of 198 kidney transplantations to people with HIV at 26 medical centers across the U.S. from 2018 to 2021.

Results from the study showed that for kidney transplants performed using organs from 99 donors with HIV and 99 without HIV, one-year survival rates for HIV-positive recipients were nearly identical (94 percent and 95 percent, respectively). Three-year survival rates were also similar (85 percent and 87 percent). Organ rejection rates were also numerically on par after three years (21 percent and 24 percent). Other measures for surgical outcomes, including the number of side effects that occurred, were also roughly the same for both groups.

This shows that, overall, HIV-positive-to-HIV-positive transplants are nearly identical in outcome to transplants between HIV-negative donors and recipients.

Where we are now

Now in 2026, CMS is pushing past the clinical trial testing phase it has been in, making HIV-positive-to-HIV-positive organ transplants more widespread and more accessible.

Adrian Shanker, the former deputy assistant secretary for health policy and senior advisor on LGBTQ health equity at HHS, explained to the Blade that the HOPE Act was a step in the right direction, but this policy change from CMS will expand the ability to help HIV-positive patients in need.

“The original HOPE Act asked for scientific research,” Shanker explained. “There were 10 years of clinical trials. The Biden administration promulgated a rule that removed clinical trial requirements for kidney and liver transplants between people living with HIV. This proposed rule is further implementation on the CMS side with the organ procurement organizations to ensure they’re carrying out the stated intent of the HOPE Act law. It’s building on consensus that has existed through multiple administrations.”

The proposed change would go into effect on July 1, and, according to Shanker, would help everyone in need of an organ — not just HIV-positive people.

“People living with HIV, their ability to receive organs from other people living with HIV in a more streamlined way means that the overall organ waitlist is sped up as well,” he added. “So it benefits everyone on the waitlist.”

Shanker, who was also a member of the Presidential Advisory Council on HIV/AIDS, spoke about how this is a rare moment of bipartisanship.

“There’s no secret that the Trump administration has been quite adversarial to LGBTQI plus health, and to the health of people living with HIV/HIV prevention resources as well … From destabilizing PEPFAR to shutting down one of the primary implementation partners, which is USAID, to firing almost the entire staff of the Office of Infectious Disease and HIV Policy at HHS … But what this is is a glimmer of hope that we can have bipartisan solutions that improve quality of life for people living with HIV.”

Harold Phillips, the CEO of NMAC, a national HIV/AIDS organization that pushes policy education and public engagement to end the HIV epidemic, and an HIV-positive American, sees this as a huge gain for the HIV-positive community.

“For a number of years, we were excluded from that pool of potential donors,” Phillips said. “Many people living with HIV were excluded from being able to get organ transplants. So this opens up that door. This is a positive step forward that will help save lives.”

That “open door,” Phillips said, does more than just provide life-saving organs to people in the most need. It provides a sense of being able to support their community.

“I remember when I was no longer able to check that box on my driver’s license,” Phillips recalled during his interview with the Blade. “I remember what that meant — that my organs might not be able to save a life. The potential that now they could is really exciting for me.”

“To think about people living with HIV donating their organs to other people living with HIV and helping extend their health and well-being — that’s an exciting moment in our history. It reinforces that HIV is not a death sentence anymore.”

Human Rights Campaign Senior Public Policy Advocate Matt Rose also sat down with the Blade to explain the realities of HIV-positive people in the U.S. right now who are looking for a transplant.

“If you’re HIV positive and on the waitlist for an organ right now, your chance of getting one is slim to nil,” Rose said. “This at least gives you a real shot.”

He went on to explain that while the HOPE Act started to move in the right direction, it hasn’t done enough for HIV-positive people in dire need.

“This bill [HOPE] was supposed to fix that — and it never really has. But every administration, we keep chipping away at the next hurdle,” he said. “This latest move will drastically expand the ability for someone who is HIV positive to donate an organ.”

That slow chipping away, in addition to the non-stop trials being done to prove the efficacy and ability for HIV-positive people’s bodies to accept organ donation, is part of the broader push to normalize this practice and remove outdated restrictions.

Shanker elaborated, explaining all that time was necessary to figure out the efficacy of HIV-positive-to-HIV-positive organ transplants but now that the data has been collected — its time to expand the availability.

“There were over a decade of clinical trials between the original HOPE Act law being signed by President Obama and our rule being promulgated at the end of the Biden administration. It was to allow those clinical trials to run their course,” Shanker said.

Nina Martinez is the first HIV-positive person to donate an organ to another person with HIV.

She explained that the stigma and lack of understanding from the general public is another hurdle that those working to improve the quality of life for people living with HIV have to deal with.

“People don’t generally understand that treatment works,” Martinez said, who became the first person to undergo HIV-positive organ donation in 2019. “When you have access to antiretroviral therapy, it lowers the virus in your bloodstream to levels so low that lab tests can’t detect it. Clinically, that correlates to good health and an inability to transmit HIV sexually. I was healthy enough to pass the same evaluation as any other living donor without HIV.”

She continued explaining:

“Just by having a diagnosis of HIV, they’re labeling donors as medically complex, and that’s not accurate. Every donor with HIV has to pass the same evaluation as donors without HIV,” she said. “If someone passes that evaluation and still isn’t allowed to donate, that’s discrimination. If a patient is willing to accept that organ and you block it because of preconceived notions, you’re denying someone care based on disability. That runs counter to basic fairness.”

When asked about her decision to become a donor and what message she hopes it sends, Martinez emphasized that the choice should remain personal.

“I didn’t undertake this endeavor to say that people with HIV should donate. This is a community that’s been through a lot and has contributed to science — we have served. But for people who wanted a way to leave a legacy, and that is what I wanted, they should be supported in that. There shouldn’t be arcane scientific perceptions and myths getting in the way of that.”

National Donor Day, which raises awareness of organ donation, is on Feb. 14. To become an organ donor, visit registerme.org.

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CVS Health agrees to cover new HIV prevention drug

‘Groundbreaking’ PrEP medication taken by injection once every six months

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CVS Health, the nation’s second largest pharmacy benefit manager company that plays a key role in deciding which drugs are covered by health insurance policies, has belatedly agreed to cover the new highly acclaimed HIV prevention drug yeztugo.

The U.S. Food and Drug Administration approved the use of yeztugo as an HIV prevention or “PrEP” medication in June 2025 as the first such drug to be taken by injection just once every six months. AIDS activists hailed the drug as a major breakthrough in the longstanding effort to end the HIV epidemic.

“We are pleased that CVS Health has finally decided to cover this groundbreaking new PrEP mediation,” said Carl Schmid, executive director of the HIV+ Hepatitis Policy Institute.

“Four months ago, 63 HIV organizations joined us in sending a letter to CVS’s president urging them to reconsider their refusal to cover Yeztugo and reminding them of their legal obligation to cover PrEP and describe the important benefits the drug would bring to preventing HIV in the U.S.,” Schmid said in a statement.

He noted that CVS Health now joins other leading pharmacy benefit manager companies and insurers in covering yeztugo. Gilead Sciences, the pharmaceutical company that developed and manufactures yeztugo, has said 85 percent of all people with health insurance in the U.S. now have coverage for the drug, according to Schmid.

“However, coverage does not automatically translate into access and usage,” Schmid said in his statement. “Too many people are being forced to pay copays while other payers, including employers, are failing to cover all forms of PrEP,” he said.

According to Schmid, the HIV+ Hepatitis Policy Institute is joining other HIV advocacy organizations in urging federal and state government officials to engage in “aggressive enforcement of PrEP insurance coverage requirements and sustained funding of state, local, and community HIV prevention programs.”

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