Health
The harsh truth about HIV phobia in gay dating
HIV and stigma remain baked into queer dating culture
Uncloseted Media published this article on Dec. 9.
This story was produced with the support of MISTR, a telehealth platform offering free online access to PrEP, DoxyPEP, STI testing, Hepatitis C testing and treatment and long-term HIV care across the U.S. MISTR did not have any editorial input into the content of this story.
By SAM DONNDELINGER | In his room, 19-year-old Cody Nester toggles between Grindr profiles on his phone.
As he senses chemistry with a match, he knows he has to flag something that could be a deal breaker.
“Did you see on my profile that I’m HIV positive?” he writes.
The reply arrives instantly.
“You’re disgusting. I don’t know why you’re on here.” Seconds later, the profile disappears, suggesting Nester is blocked.
“He went out of his way to say that. People could at least be more aware, ask questions, and understand the reality [of living with HIV] instead of attacking us,” Nester told Uncloseted Media.
“I would say 95 percent of people respond that way,” says Nester, who lives in Hollywood, Fla., and works at a Mexican restaurant. “The entire conversation is going fine. They’re down to meet up and then right when I mention [HIV], it’s always, ‘Oh no, never mind.’”
Some other messages he’s received include:
“You’ll never get anything in your life.”
“Why don’t you die?”
“Why are you on here?”
More often, it’s silence, a cold “No” or a sudden block.
“It’s like you’re a white fish in a school of black fish,” he says. “You’re immediately the odd one out.”
Even though Nester’s undetectable status makes it impossible for him to transmit HIV to partners during sex, he experiences stigma around HIV, something which nearly 90 percent of Americans agree still exists, according to a 2022 GLAAD report. And a survey shared in 2019 found that 64 percent of respondents would feel uncomfortable having sex with someone living with HIV, even on effective treatment. The emotional cost of this stigma is a significant barrier to intimacy and can result in a loss of self-esteem, fear of disclosure and suicidal thoughts.
What the science says — and why it doesn’t seem to matter
“The fear comes from antiquated ideas around HIV,” says Xavier A. Erguera, senior clinical research coordinator at University of California, San Francisco,’s Division of HIV, Infectious Diseases & Global Medicine. “A lot of people who are newly diagnosed still fear it’s a death sentence. Even though we have medications now to treat it effectively, and it’s basically a chronic condition, people haven’t caught up.”
Since 1996, antiretroviral therapies have developed to where they can suppress the virus to levels so low that it is undetectable in the blood, and thus not able to be transmitted to sexual partners. This is known as Undetectable = Untransmittable, or U=U. According to a Centers for Disease Control and Prevention report from 2024, 65 percent of HIV-positive cases are virally suppressed.
Another line of defense is pre-exposure prophylaxis (PrEP), which reduces the risk of acquiring HIV from sexual intercourse by roughly 99 percent when taken as prescribed. Approved by the Food and Drug Administration in 2012, the medication launched as a once-a-day pill and was hailed as a breakthrough as it transformed the sex lives of gay men, which had been shaped by decades of fear about HIV complications and about where AIDS came from.
“Internal logic doesn’t reflect what we know scientifically,” says Kim Koester, associate professor in the Department of Medicine at UCSF. “I was very optimistic when PrEP came out. The drug works, so why wouldn’t everyone use it?”
Even with PrEP use on the rise, less than 600,000 Americans used it in 2024, and Koester says skepticism and judgments about taking the drug persist.
“The phobia is pervasive,” Koester told Uncloseted Media. “People believe that others get the disease because of their lifestyle. … PrEP was supposed to be the antidote to the threat of HIV, reduce the anxiety, and make you more open to who you are and the sex you want. It’s supposed to be liberating. It is part of the answer. But it’s not enough. We don’t have enough people using PrEP for it to make the dent in the stigma we need.”
According to a 2023 study of seven informants living with HIV, public stigma stems from problematic views from society that those living with HIV are “a dangerous transmission source,” “disgraceful” and “violators of social and religious norms who have committed deviant behavior.”
Laramie Smith, assistant professor of Global Public Health at the University of California, San Diego, says this stigma is unwarranted and fueled by misunderstanding:
“With today’s treatments, it shouldn’t be a life-altering identity shift. It should be no different than, ‘I have diabetes.’ If you’re virally suppressed, it shouldn’t matter whether you’re friends with someone, whether you’re sleeping with someone — the science shows us that.”
How HIV phobia shows up online
Nester, who contracted HIV last year from a Grindr hook-up who insisted he was negative, says he is just starting to accept his diagnosis. “I didn’t go back on the apps for a long time after that. It messed with my mental health … realizing I’d have to take medication for the rest of my life.”
Since he started dating again this year, returning to apps like Grindr and Sniffies, he has faced a new normal. He tries to do everything “right” and disclose his status early. Even on his Grindr profile, he identifies as “poz,” slang for HIV-positive.
Still, he says most people ghost him once they find out. “The second I bring it up, it’s ‘No,’” says Nester. “The amount of discrimination you get … it’s always the same pattern. … People don’t know, and they don’t want to know. It messes with you.”
This discrimination may be fueled by a deprioritization of HIV awareness programs across the country. Earlier this month, the U.S. State Department did not commemorate World AIDS Day for the first time in 37 years. HIV prevention programs have been slashed, especially in conservative districts, and only 25 states and D.C. require both HIV and sex education. In many states, health curricula often lag behind current science and omit teaching about PrEP, gay sex and concepts like U=U. Research shows that Gen Z is currently the least educated generation about HIV.
“I could go all day explaining HIV, but people don’t want to listen,” says Nester, who is part of Gen Z. “People don’t want to learn about it; they just want to avoid it.”
HIV anxiety and public stigma shaped by history
Even in more progressive areas, stigma still exists. Damian Jack, a 45-year-old from Brooklyn, remembers sitting in an exam room in 2009 as a doctor explained how low his T-cell count was, which is a hallmark of HIV infection.
“I started hysterically crying,” he told Uncloseted Media. “HIV meant death. That’s what I thought.”
In 1981, when Jack was 1 year old, the first reports of a mysterious and deadly immune deficiency syndrome, which would later be named AIDS, appeared in the U.S. Growing up, Jack saw countless terrifying images of men on their deathbeds with Kaposi sarcoma, the purple lesions the media once called “gay cancer.” Public misinformation and fearmongering spread ideas that AIDS was a disease that “only gay men and drug users get.” And politicians often equated it with homosexuality and moral failure, calling it a “gay plague.” It wasn’t until September 1985, four years after the crisis began and thousands had died, that President Ronald Reagan first publicly mentioned AIDS.
Decades later, the emotional residue of that era and the shame associated with the virus lingers.
Hours after learning of his diagnosis, Jack faced his first encounter with rejection. He already had a date planned that night, and his doctor and friends encouraged him to go.
They had a great time until the date asked him: “Are you negative or positive?”
He told the truth.
“It was just understood there wouldn’t be a second date,” says Jack. “I remember thinking, ‘This is how dating is going to be now.’ I felt so anxious telling guys. It followed me everywhere. I don’t think that anxiety ever truly goes away.”
The emotional impact of HIV stigma
For those who are HIV-negative, experts say that “stigma’s whole design is to ‘other.’”
“The ‘us versus them’ creates that false sense of safety when it comes to HIV,” says Smith. “If I can believe that someone did something to deserve their diagnosis, and I’m not that [kind of person], then I’m safe.”
This othering is painful and can lead to shame, fear and isolation, and it is linked to a higher risk of depression and anxiety.
“If I’m undesirable, and that’s what those messages are communicating, that threatens your sense of safety, your sense of belonging and the fundamental desire we all have to be loved,” Smith says. “And that starts to reinforce the thinking that ‘I am not worthy. This virus that I have means that I’m not lovable. I am not safe showing up among other men.’”
“I pretend it doesn’t hurt, but some things do sting a little bit,” Nester says. “You start thinking, ‘Am I really that disgusting? Am I really that singled out?’”
When public stigma turns inward
“Internalized stigma is what occurs when applying the stereotypes about who gets HIV, the prejudice, the negative feelings, onto yourself,” says Smith.
In 2024, 38 percent of people living with HIV reported internalized stigma. And studies show that it can predict hopelessness and lower quality of life, even when people are engaged in care or virally suppressed.
Internalized stigma can also affect how people practice safe sex and communicate about the virus. A 2019 survey of men who have sex with men found that individuals who perceived greater community-level stigma were less likely to be aware of — and use — safer-sex functions available on dating apps, such as HIV-status disclosure fields, as well as sexual health information and resources.
“[HIV phobia] is probably the most intense, subvert bigotry I think you could experience,” Joseph Monroe Jr., a 48-year-old living in the Bronx, told Uncloseted Media.
On dating apps, men have messaged him things like, “You look like you’ve got that thing” and “Go ahead and infect someone else.”
Monroe has also dealt with misinformed people who rudely opine about how he contracted the virus: “Who fucked you? That’s how you got it, right?” people will say to him.
“You end up internalizing all these stereotypes about who gets HIV — that you were promiscuous, that you didn’t care about yourself, that you did something wrong,” says Smith. “You carry that in, and then you have to relearn: ‘No, I didn’t. This is just a health condition.’”
What HIV acceptance looks like and raising awareness
For those living with HIV, acceptance feels far away.
“You’re living under this threat of HIV and the threat that others find you threatening. It inhabits you socially and sexually,” Koester says. “People are hunkering down. Not putting themselves out there and having a mediocre quality of life. To have a sense of empowerment, you have to be legitimate and seen in the world and it’s hard to do that with the stigma that exists.”
Researchers say the path forward lies as much in conversation as in medicine.
Koester says she talks about HIV and PrEP anywhere she can, including in salons, cafes and restaurants. “Whenever I get into a cab with someone, I’m going to bring up HIV so the driver gets accustomed to hearing about it. … We have a long way to go in terms of exposure and awareness and every little bit helps.”
Part of this lies in increasing awareness through targeted marketing campaigns. PrEP is still profoundly misunderstood outside major urban centers, with uneven uptake among minority groups and usage gaps in the Bible Belt. And a 2022 U.S. survey found that 54.5 percent of people living with HIV didn’t know what U=U meant, and less than half of Americans agree that people living with HIV who are on proper medications cannot transmit the virus.
While eradicating stigma is slow, there is hope for acceptance.
Years after Jack’s diagnosis, in 2021, he told a man he was on a third date with that he was HIV-positive but undetectable. His date’s reply was almost casual:
“Oh — is that it? I thought you were going to say you had a boyfriend or something. I’m on PrEP. You’re fine.”
“It felt so good to hear him say that and accept me,” says Jack. “I was like, ‘This is my person. You’re my person.’” One year later, they got married.
Back in Florida, 19-year-old Cody Nester isn’t feeling this acceptance. He still scrolls past profiles that read “Only negative guys” and tries to ignore the hateful messages.
“It still hurts, but I know it’s coming from fear,” he says. “I wasn’t too informed about HIV before I got it. … When I got it, I really jumped into the rabbit hole and began to learn. I really do think [HIV and stigma] is because people are not knowledgeable. … When people don’t know details, they tend to get scared.”
Additional reporting by Nandika Chatterjee.
Health
Too afraid to leave home: ICE’s toll on Latino HIV care
Heightened immigration enforcement in Minneapolis is disrupting treatment
Uncloseted Media published this article on March 3.
This story was produced in collaboration with Rewire News Group, a nonprofit publication reporting on reproductive and sexual health, rights and justice.
This story was produced with the support of MISTR, a telehealth platform offering free online access to PrEP, DoxyPEP, STI testing, Hepatitis C testing and treatment and long-term HIV care across the U.S. MISTR did not have any editorial input into the content of this story.
By SAM DONNDELINGER and CAMERON OAKES | For two weeks, Albé Sanchez didn’t leave their house in South Minneapolis.
“[I was] forced into survival mode,” Sanchez told Uncloseted Media and Rewire News Group (RNG). “I felt like there was an invisible wall [to the outside world] that I couldn’t cross unless I really wanted to put myself in a place where there was a chance that I might not be able to come back.”
Queer and Mexican American, Sanchez was afraid of being targeted by the Immigration and Customs Enforcement presence in their neighborhood, even though they are a U.S. citizen.
“Every day is a risk,” they say, adding that even if they have paperwork, if they fit the profile, they are a target, making it scary to go even to work or the grocery store.
Sanchez, a 30-year-old sexual health care educator, has been taking oral PrEP, the daily preventive medication for HIV, for over a decade. But the mounting stress of ICE raids has made it harder to keep up with dosing.
“A missed dose here and there pushed me to make the appointment [for something more sustainable],” they say.
Sanchez says they felt like somebody would have their back at their local clinic. It was only a 10-minute drive from where they worked, they knew its staff from previous visits and community outreach, and they could count on finding Spanish-speaking staff and providers of Latino heritage. But not everybody has had that same experience accessing care.
Since ICE’s Operation Metro Surge began in early December, an increasing number of Latino patients in Minnesota are delaying or canceling what can be lifesaving care for the prevention and treatment of HIV.
These findings are particularly alarming for Latino communities, who, as of 2023, are 72 percent more likely than the general U.S. population to be diagnosed with HIV. And while overall infections have decreased, cases among Latinos increased by 24 percent between 2010 and 2022.
“I’m very concerned that there is going to be a sharp uptick in transmission,” says Alex Palacios, a community health specialist in the Minneapolis area.
In a January 2026 declaration as part of a lawsuit seeking to end Operation Metro Surge in the days following Renee Nicole Good’s killing, the commissioner of the Minnesota Department of Health said HIV testing among Latino populations has “dropped dramatically” and that “although grantee staff continue to go into the community to promote and provide testing, people are not showing up.”
Local clinics are reporting the same thing. The Aliveness Project, a community wellness center in Minneapolis specializing in HIV care, told Uncloseted Media and RNG they have seen more than a 50 percent decrease in new clients. The clinic serves a large number of Latino and undocumented clients, and while it usually sees 750 people walk through their door each week, according to providers, it reported seeing 100 fewer people each week since December.
Red Door, Minnesota’s largest STI and HIV clinic, has had a “modest uptick” in no-shows and missed appointments since December.
What happens when treatment stops
Today, there are multiple medications available that work to prevent HIV and dozens that treat it once a person tests positive. Many people who consistently take their medication have such low levels of the virus that they can’t transmit it through sex. But becoming undetectable requires patients to stay on their medication; otherwise, the virus replicates and mutates, weakening the immune system and increasing the risk of life-threatening infections.
“If patients aren’t on their medicines consistently, HIV can learn about the medication and become resistant to them. When this happens, the medicine will not work for the patient, and the new resistant virus could potentially be passed on to others,” says George Froehle, a physician assistant and provider at Aliveness Project. “Medication adherence is one of the most important aspects of HIV care.”
To maintain care and prevent dangerous, untreatable strains from spreading in Minnesota, providers at Aliveness Project have begun delivering medication to patients when possible, offering telehealth when they can, and pausing routine lab work to limit in-person appointments.
“The most important thing we can do from a public health perspective is to keep people undetectable so they don’t transmit HIV,” Froehle says, adding that providers in other cities targeted by ICE will need to make plans for missed injection visits, pivot to telehealth and prepare their teams for the “trauma that can occur.”
Sanchez understands the risks of inconsistent treatment, which is why they opted for the injectable preventative medication.
“I have a lot of risk [to HIV in my community],” Sanchez says. “With so much uncertainty about the future and whether HIV care will remain stable, I realized I couldn’t let this opportunity pass.”
But injectable HIV treatments are commonly dosed at two weeks to six months apart, and the medication must be administered in a clinic — a setting many patients are avoiding, according to providers.
“They have a two-week window” to get their shots, according to Froehle, who added that because patients are afraid to come in person, they have had to transition people off of their injectable HIV treatments. This has caused patients to return to oral HIV treatments without the testing they would normally receive had ICE not been in Minneapolis. “[Oral treatments] weren’t super successful [for these patients] to begin with and that’s why they were on injectables.”
Oral HIV medications, too, must be taken consistently to work. In response, providers have urged patients to have their pills with them at all times in case they get deported or detained.
The caution is not unfounded. Federal immigration facilities have a history of denying adequate medical care to people living with HIV, despite internal standards that require them to comply. Since 2025, at least two men living with HIV have been denied access to their medication in a Brooklyn jail, according to lawsuits obtained by THE CITY. One man said he was only given his medication after his lips broke open and he developed an open pustule on his leg. And in January 2025, another man died of HIV complications while in ICE custody in Arizona.
Beyond being detained without proper medication, patients are at risk of being deported to countries with limited access to HIV care, like Honduras and Venezuela, experts say.
“A lot of men [from Venezuela] told me they left because it wasn’t safe to be gay there and because they struggled to access HIV care,” says Froehle. “It’s a little heartbreaking to see new folks not only face the threat of deportation, but to places where they didn’t feel safe medically or identity-wise.”
“Some of these patients will die in their home country,” says Anna Person, the chair of the HIV Medicine Association. “It’s a death sentence.”
A ‘cascading disaster’
While ICE’s presence is threatening the infrastructure of HIV care that Minneapolis has built over decades, experts say there has always been a blind spot in HIV care for the city’s Latino community.
Vincent Guilamo-Ramos, executive director of the Institute for Policy Solutions at the Johns Hopkins University of Nursing, describes HIV in Latino communities as a “cascading disaster,” the result of years of compounding inequities.
“There’s been an invisible crisis among Latinos that hasn’t gotten traction,” he says. “The numbers have consistently gone up in terms of new infections, while nationally they’ve gone down. … That should be a big alarm.”
Numbers are rising because structural barriers and stigma are preventing Latinos from receiving care. A 2022 report from the Centers for Disease Control and Prevention found that between 2018 and 2020, nearly 1 in 4 Hispanic people living with HIV reported experiencing discrimination in health care settings. Lack of representation among providers, language barriers and deep-rooted medical mistrust further complicate access to care, according to Guilamo-Ramos.
Beyond the medical system, stigma within Latino communities can be equally damaging. According to Human Rights Campaign data, more than 78 percent of Latino LGBTQ youth reported experiencing homophobia or transphobia within the Latino community in 2024.
Sanchez agrees that stigma and bias are already massive barriers to care, citing the strict gender norms and Catholic beliefs many Latino communities hold. They say ICE’s presence is threatening already delicate access to HIV care.
“This has caused so much damage to people,” Sanchez says. “Not being able to access your health care appointments is such a stab in the side. … Being able to navigate any of these things in normal circumstances already has so much difficulty to it.”
Palacios, who is Afro-Latine and living with HIV, says the heightened ICE presence is worsening barriers that have long undermined the Latino community’s access to HIV care.
“The horizon has always been stark and dim,” they say. “And this just feels like one more thing to address and to fight back against.”
Sliding backwards
Navigating HIV care is becoming more difficult across the board, as the federal government has decimated HIV funding, compromising decades of progress made in the fight against the virus since Donald Trump retook office just over a year ago.
In February 2026, three months into Operation Metro Surge, the Trump-Vance administration proposed slashing $600 million in HIV-related grants, targeting four blue states, including $42 million for Minnesota programs. A federal judge has temporarily blocked the cuts.
“This would completely decimate and gut all of our HIV prevention,” says Dylan Boyer, director of development at Aliveness Project. “That’s the reality that we live in.”
“We have all the tools, and yet we are staring down this rollback of infrastructure and research dollars, prevention efforts, treatment efforts, that are going to put us squarely back in the 1980s,” says Person, a national HIV expert who grew up in Minnesota. “[There] seems to be no other rationale for that besides cruelty, to be quite frank, since there’s no scientific reason for it.”
Repair and representation
Jenny Harding, director of advancement at a Minneapolis-area supportive housing program for people living with HIV, says that while ICE’s presence is lessening in the Twin Cities, the “damage is done.”
Person says that this mending will take time, especially between the medical community and patients, since HIV providers can have a “very fragile” relationship with their clients.
“It takes, sometimes, years to build that level of trust. And I do worry that folks are just going to say, ‘I don’t feel safe here anymore. The system does not have my best interest at heart, and I’m not coming back,’” she says. “This is not something that you can flip a switch and everything will go back to normal.”
“We need to hold our federal government accountable, particularly HHS, [and] we need to ensure that HIV funding remains intact,” Guilamo-Ramos says, adding that in order to lower rates of HIV in the Latino community, there should be more specialized efforts: such as bilingual and culturally aligned health care providers, community-based outreach programs co-located where risk is highest, trust-building initiatives to address medical mistrust, mobile clinics, and targeted programs to re-engage patients who have fallen out of care.
Aliveness Project’s patient numbers have increased in the last few weeks as the ICE operation has waned, but the clinic staff is keeping “a watchful eye” and is having “difficulty reaching folks who are understandably scared.”
“Our biggest focus right now is reconnecting with people through our outreach so no one has a lapse in their HIV medications or prevention care,” Boyer, of Aliveness Project, says.
For Sanchez, seeing providers who speak Spanish and are of Latin heritage at Aliveness Project built enough trust for them to reach out and make an appointment despite the risks. Sanchez feels optimistic about their new injectable prevention strategy with the support of their clinic.
“There’s many places where you can receive care here in the Twin Cities where you might not see your skin tone. … There’s still a lot of health care professionals that unfortunately carry bias. … Aliveness is the opposite of that,” they say. “Seeing that representation and knowing someone has that cultural context of how to meet you in moments of sensitivity, it’s crucial.”
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.
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