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AIDS drugs cut off for Va. ADAP patients

Gay man dropped because T-cell count is ‘too high’

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The Virginia Department of Health announced in December that 760 uninsured people with HIV who were being dropped from the state’s AIDS Drug Assistance Program due to a funding shortage could remain on the program until they found an alternative means of obtaining their medication.

But an undetermined number of Virginia ADAP clients who were dropped from the program during the past month have yet to be placed in an alternate program, and their supply of life-saving medications has run out, according to the directors of AIDS clinics in Fredericksburg and Fairfax County.

“Some of them are getting on other programs such as patient assistance programs from pharmaceutical companies and some of them are not,” said Zachary Hatcher, executive director of the Fredericksburg Area HIV/AIDS Support Services, a non-profit, community-based clinic similar to D.C.’s Whitman-Walker Clinic.

“And some of them are getting caught in this balance of not having enough medication to last them until they can get onto another program and they’re being taken off ADAP, which is very problematic,” he said.

Hatcher said Karen Berube, director of the INOVA Juniper Program, a non-profit clinic providing medical care to HIV patients in Fairfax County, told him she was seeing a similar development where dropped ADAP patients were running out of their AIDS drugs before being placed on an alternate program.

Berube couldn’t be immediately reached for comment. But sources familiar with the Metropolitan Washington Regional HIV Health Services Planning Council, which monitors ADAP issues in Virginia, D.C. and Maryland, among other areas, said they knew of dropped ADAP patients in Fairfax who had run out of drugs before being placed in another program.

Last week, Dr. Maureen Dempsey, the department’s deputy chief for public health, said the cutback in the ADAP program was designed to ensure that no one would be dropped and lose access to their drugs until they were placed in an alternate program.

This week, when the Blade made a follow-up inquiry after information surfaced that people were being dropped from the program without being placed in alternate programs, Dempsey said in a written statement that the department “will not transition a client without making every effort to contact them and provide assistance.”

She said in the statement that efforts to help clients “can be difficult” if the client initially provided inaccurate contact information. She said problems in transitioning to another program also arise if the client or their medical provider “encounter difficulties with signing and providing the necessary information within the timeline.”

Hatcher said clients sometimes encounter difficulties providing detailed financial information required by drug companies that offer drugs to former ADAP patients through Patient Assistance Programs or “PAP.” But he said clients in his and other clinics have case workers available to assist the patients and he did not believe this was the principal reason Virginia ADAP patients haven’t been able to find alternate programs.

A gay male resident of Fauquier County, Va., who is a client of the Fredericksburg Area HIV/AIDS Support Services clinic, said he’s been scrambling to find an alternate drug assistance program since December. At that time, a Virginia Department of Health employee informed him in a phone call that he had been dropped from ADAP, said the man, who spoke on condition that he not be identified.

“She wouldn’t give me her name or a way to contact her,” he said. “I kept calling and calling and calling,” he said, in a desperate attempt to find out why he was being dropped and who he could turn to continue to obtain the medication that has kept him healthy for nearly 10 years.

“The only thing they said early on was that they deemed that I was too healthy because my numbers are fairly strong,” the man said, referring to his T-cell counts, which measure the effectiveness of the body’s immune system.

When he finally received a letter from the state health department, it said the funding cuts had forced the department to decline his application to become a new ADAP client.

“I tried to tell them I was already in the program and that you dropped me,” he said. “So they’re telling the public that they won’t drop you until you’re placed in another program. That’s just a lie.”

Hatcher said the health department’s claim that it would smoothly transition everyone dropped from ADAP into another program is “an ideal concept to work toward” rather than a reality. The decision by the state to drop 760 people from the ADAP rolls created an enormous burden to transition so many people to other programs within just a few weeks time, he said.

“What we’re seeing is that there are people who are being removed before they have another option in place,” he said.

He said state health officials are now aware of this problem are working hard to correct it.

“They say I’m too healthy, but that won’t be for long,” the gay former ADAP patient said. And then I’ll get sick and will there be any help for me?”

He said the Fredericksburg clinic was working hard to find an alternate program for him. He was hopeful that a pharmaceutical industry program known as the Patient Assistance Program (PAP) would accept him and enable him to resume his medications that ran out about two weeks ago.

In December, the Virginia Department of Health announced that a severe funding shortage brought about by an unprecedented increase in enrollment in the program and shortage of state funds forced the state to cut the scope of the program.

ADAP is part of the federal Ryan White CARE Act program, in which the federal government and states share the costs of ADAP.

Virginia Gov. Bob McDonnell has proposed an increase in the state’s share of funding for ADAP for fiscal year 2012.

State health officials said that in addition to dropping as many as 760 ADAP clients, the state was closing its enrollment of new clients for the program except for pregnant women, children 18 years old or younger and people receiving treatment for an AIDS-related infection. Health department officials also said people with T-cell counts above a certain threshold level, at which they were not deemed to be at immediate risk for illness, would also be dropped from the program.

In her statement, Dempsey said the Virginia Department of Health has assembled “specialized teams” to help patients find alternate sources of obtaining their needed drugs. She said the department also created a toll-free helpline at 1-800-533-4148 to assist dropped ADAP patients.

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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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