Health
The graying of AIDS: living longer with HIV
‘None of us expected to live this long’
D.C. resident John Klenert signed up for a National Institutes of Health-funded AIDS study at Johns Hopkins University in 1984. The Centers for Disease Control reported the first cases of what became known as AIDS three years earlier, but some of Klenert’s friends had already passed away from the virus by the time the research project had begun.
“We figured if there was going to be a cure that we would be the first ones to volunteer to get these tests,” he said.
Johns Hopkins researchers in 1986 screened the first blood samples that Klenert and other study participants had given once scientists discovered the virus that causes AIDS. “For me, the first blood I had given was positive,” he said. “I would have been shocked had I turned out to be negative.”
Older people with HIV will be the focus of a July 25 forum at the International AIDS Conference. Panelists will include Ricardo Jimenez of the Ecuadorian Red Cross, Carolyn Massey of Older Women Embracing Life, Inc., Wojciech Tomczynski of the Polish Network of People Living with HIV/AIDS Association and Ruth Waryaro of Help Age International in Uganda. Doctor Kevin Fenton of the Centers for Disease Control and Prevention and Stephen Karpiak and Mark Brennan-Ing of AIDS Community Research Initiative of America’s Center on HIV and Aging and New York University College of Nursing are among those who are scheduled to speak during the plenary.
The CDC estimates that 10.8 percent of the roughly 50,000 new HIV infections that occur each year in the United States are among those older than 50. It further reports that 16.7 percent of new diagnoses in 2009 were among this demographic, with half of them also having AIDS. Federal health officials predict that half of people with HIV in the United States by 2015 will be older than 50.
ACRIA, the New York-based Gay Men’s Health Crisis and Services and Advocacy for GLBT Elders co-organized the forum as part of what SAGE Senior Director of Public Policy Robert Espinoza described to the Blade as a need to increase visibility around HIV-related aging issues.
“We feel it’s an important conversation because there are so many people who are aging with HIV and AIDS,” he told the Blade.
Increased access to treatment in the United States and other developed countries has allowed more people with HIV to live longer. The arrival of more widely available anti-retroviral drugs in the mid-1990s has also contributed to this trend.
“If you were 35 in 1990 and you made it to the mid to late 90s and got on protease inhibitors, there’s a good chance you’re still alive today and you’d be above 50,” said ACRIA executive director Daniel Tietz. “And that’s the reality.”
Older people with HIV face unique challenges
Johns Hopkins and CDC researchers noted earlier this year that older people with HIV are more likely to suffer higher rates of cardiovascular disease, osteoporosis, non-AIDS related cancers and other chronic illnesses. Klenert, who is now 63, has had a brain tumor removed and an operation to repair an aneurysm over the last 30 years. He said that his neurologist and cardiologist both said that his HIV status did not contribute to either of these conditions.
“There are many folks who age into this — they’ve had HIV for a while, their HIV is reasonably well-managed,” said Tietz. “It’s their other things. It’s their hypertension, the diabetes, the heart disease that are posing challenges in terms of management.”
This population also faces the same hurdles that service providers maintain older LGBT people without the virus routinely face. These include a lack of health care, financial insecurity and social isolation, but a person’s HIV status can acerbate these problems.
“The LGBT community in general is not great on aging issues; they tend to be more youth centered,” said Espinoza. “We find that a lot of older adults with HIV are often looking just for both the caregiving support they need to manage their health and remain optimistic and maintain their emotional health, but they are looking for community.”
He and other service providers stressed that stigmas associated with HIV and sexuality can dissuade older people from discussing their sexual health with doctors and other health care providers.
“If you’re not talking openly to people who manage your health then it’s going to then prevent the kind of services you need to age successfully,” said Espinoza, further stressing that many health care providers don’t even provide HIV tests to their older patients who could have just become sexually active after leaving a relationship or getting divorced. “We’re dealing with constituents who have been living with HIV and AIDS for years. We’re dealing with constituents who have been infected for years, but just got diagnosed, which often means the illness has progressed more in their bodies. And then we’re also dealing with constituents who just became infected and are trying to assimilate to both the emotional and health issues related to their infection.”
The New York City Council has funded ACRIA’s efforts to bolster HIV prevention efforts among older New Yorkers with HIV. The National Institutes of Health’s Office of AIDS Research has also established a working group to study the virus’ impact on older people.
“I don’t think government officials have put this on their radar screen as much as they should,” said Espinoza. “As the demographic really begins growing in the next two years, we’re going to see more questions from aging providers and health care professionals about what it means to appropriately serve older adults with HIV and engage them in their facilities or in their long-term care facilities. And with that, I’m hoping that government officials will also increase their attention and increase the funding for that kind of programmatic prevention.”
Seeking to increase visibility
Those who advocate on behalf of older people with HIV further stress that lack of visibility remains a problem.
The Graying of AIDS project profiles older people with the virus as a follow-up to photojournalist Katja Heinemann’s eponymous photo essay that “Time” published in 2006 to mark the epidemic’s 25th anniversary. D.C. resident Ronald Johnson, vice president of policy and advocacy for AIDS United, is among the 11 people that Heinemann and Naomi Schegloff profile in photographs and short videos.
Schegloff, who works in the public health field, told the Blade that she “very much appreciated” what she described as “frank discussions” about sexuality that took place with many of those whom she and Heinemann profiled. Discrimination, a desire for companionship and a general lack of information about HIV are also common themes.
“A lot of older adults have not been on the market in the last 30 years, or have barely been on the market in the last 30 years,” said Schegloff. “If they’ve been with a partner — married or otherwise — for a long time, they may or may not have dated at a time when HIV was something we knew about. If for them condoms are something that you use to avoid getting pregnant and they’re heterosexual and they’re a woman and they’ve gone through menopause, they’re not worried about that anymore. And it used to be that for people of a certain generation, the worst thing you could get through sex as one person told us in an interview is something you can take penicillin for now. They weren’t necessarily thinking about this thing [HIV] as being relevant to them.”
Heinemann and Schegloff plan to photograph and interview those from the United States and around the world who are interested in participating in their project during the Global Village at the International AIDS Conference. They will upload images, interview excerpts and other content to an online exhibition during the five-day gathering.
“For us as a visual project and a documentary project, we’re hoping to really put a face to this that will be a little bit of a wakeup call where you don’t just read the statistic,” said Heinemann. “But you’re also able to see oh yeah wait a minute, this is not just Bill in Chicago and Ronald in D.C. This is also a person from Tanzania; this is also a person from Russia or someone from India.”
Klenert, a former Victory Fund and Gay and Lesbian Alliance Against Defamation board member, also reflected upon those with HIV who continue to grow older.
“I’d like to think that people in my age group are hopeful as well as surprised,” he said in response to a question about the changes he has seen since he tested positive. “I’m guessing that most of us didn’t think that we would live this long. There’s that old greeting card [that says] had I lived this long I would have taken better care of us. Back when we were in our 30s — or late 30s — none of us expected to live this long because back then the mortality rate was almost 100 percent.”
District of Columbia
Trans activists arrested outside HHS headquarters in D.C.
Protesters demonstrated directive against gender-affirming care
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.”

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.
Health
CMS moves to expand HIV-positive organ transplants
HIV/AIDS activists welcome potential development
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.
Health
CVS Health agrees to cover new HIV prevention drug
‘Groundbreaking’ PrEP medication taken by injection once every six months
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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