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HIV research sped development of COVID vaccine

Top NIH official says success in coronavirus will boost AIDS work

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‘In many ways, the work for the past 25 years that we’ve done in HIV vaccines sped the development of coronavirus vaccines,’ Carl W. Dieffenbach, Ph.D.

Since 1996, Carl W. Dieffenbach, who holds a Ph.D. in biophysics from John Hopkins University, has served as director of the Division of AIDS at the National Institute of Allergies and Infectious Diseases, which is an arm of the U.S. National Institutes of Health or NIH.

In a June 10 interview with the Washington Blade, Dieffenbach gave an update on the extensive, ongoing research into the development of an HIV/AIDS vaccine that he has helped to coordinate for many years, including current human trials for a prospective AIDS vaccine taking place in the U.S., South America, and Africa.

One thing he feels passionate about is a development not widely reported in the media reports about the successful development of the COVID-19 vaccine. According to Dieffenbach, the extensive research into an AIDS vaccine in recent and past years, while not yet successful in yielding an effective AIDS vaccine, helped lay the groundwork for the rapid development of the different versions of a COVID vaccine.

“Because my division runs the largest clinical trials program in the word, we jumped in with both feet to help with coronavirus disease for both vaccines and drugs and things like that,” he said. “And the platforms that were used – the way they are making the coronavirus vaccines – the RNA vaccines with Moderna – were first piloted by NIH and Moderna to try to make an HIV vaccine,” Dieffenbach says.

“So, in many ways, the work for the past 25 years that we’ve done in HIV vaccines sped the development of coronavirus vaccines,” he told the Blade. “And now it’s time to take what we’ve learned from coronavirus and take it back to HIV and start afresh or continue with what we have and build upon from what we have learned.”

Dieffenbach says one reason the development of a COVID vaccine came about before an AIDS vaccine, despite more than 20 years of AIDS vaccine research, is that the HIV virus is far more complex than the coronavirus, especially its ability to infect and remain embedded in the infected person for life. 

“Back in 2007 we had the first hint that an AIDS vaccine might be possible with a study called RV144,” Dieffenbach says. “We spent 10 years trying to replicate that, and we just completed that study – a study called HVTN702. And it showed no efficacy,” he said, meaning it did not work.

“So that was a big disappointment to us,” he says “But in the meantime, we had pushed forward with the J&J [Johnson and Johnson pharmaceutical company] vaccine and are pretty far along. We’ll see what happens. We should know in the next several months whether the N26 version of an AIDS vaccine, and HIV vaccine works or not,” he says. “We’re very close to an answer.”

Washington Blade: Where do things stand in the development of an HIV/AIDS vaccine in light of Dr. Fauci’s statement a few weeks ago that the development of a COVID-19 vaccine could provide a boost to developing an AIDS vaccine?

Carl Dieffenbach: Sure. So, maybe I can start by introducing myself to you as a way of putting this into a context.

So, I’m the director of the Division of AIDS, which is the largest funder of HIV research in the world. And I report directly to Dr. Fauci. So, I’m responsible for all AIDS, all the time. And that is my passion and purpose in life. Part of that is working toward a safe, effective, and durable HIV vaccine, which has been one of the two most challenging questions left in science today. The other is a cure. They are connected in some ways.

So, with that as background, when coronavirus disease came along – because my division runs the largest clinical trials program in the world – we jumped in with both feet to help with coronavirus disease for both vaccines and drugs and things like that. And the platforms that were used – the way they are making the coronavirus vaccines – the RNA vaccines with Moderna were first piloted by NIH and Moderna to try to make an HIV vaccine. So, we’ve being working on that platform with Moderna for several years.

The leadership at Pfizer used to be part of a group at Penn, where we were also working with them. The J&J vaccine – we currently have in two Phase III clinical trials for HIV, one in sub-Saharan Africa, specifically in young women and the other one in the Americas in men who have sex with men and transgender individuals. Both of those Phase IIIs are moving along. The women’s study is fully enrolled. The men’s study was hit hard by COVID, but we worked through and will be fully enrolled by September.

One other vaccine just to talk about is the Oxford vaccine, the AstraZeneca vaccine. That is also using a platform at Oxford University, which has been used for HIV. So, in many ways, the work for the past 25 years that we’ve done in HIV vaccines sped the development of coronavirus vaccines. And now it’s time to take what we’ve learned from coronavirus and take it back to HIV and start afresh or continue with what we have and build upon from where we have learned.

Blade: That’s very interesting. But can we assume, then, from the clinical trials that have taken place for an HIV vaccine that they did not succeed in providing the immunity needed for an effective vaccine? 

Dieffenbach: So, that’s exactly the problem we have. Back in 2007 we had the first hint that an AIDS vaccine might be possible with a study called RV144. We spent 10 years trying to replicate that, and we just completed that study – a study called HVTN702. And it showed no efficacy. So, that was a big disappointment to us. But in the meantime, we had pushed forward with the J&J vaccine and are pretty far along. We’ll see what happens. We should know in the next several months whether the N26 version of an AIDS vaccine, and HIV vaccine works or not. We’re very close to an answer.

Blade: So, the human trials are ongoing.

Dieffenbach: Oh, again – the study in young women in sub-Sahara Africa is fully enrolled. The men’s study will be fully enrolled in September. So, we have fought through the coronavirus epidemic to maintain, to nurse these trials along to make sure with the $100 million or so we’ve invested, that we didn’t want them to go down the drain literally because we lost too many people for follow-up. So, this was a herculean effort that has gone on all the time trying to do the vaccine studies for coronavirus disease, which we were also incredibly successful in.

Blade: Can we assume all of the people participating in the studies were HIV negative?

Dieffenbach: Yes, they’re HIV negative. They are people who are at risk. And also, in South America, for example, the major countries we’re in are Peru and Brazil. And they’ve had a strong research culture with us, going back more than a decade. For example, both of those countries played big roles in our studies of pre-exposure prophylaxis. A study called I-PREX that demonstrated that in men who have sex with men that [a PrEP drug] works well to prevent HIV acquisition in seronegative men who have sex with men.

So, we’ve been there. This is a really good setup for the countries, for the citizens that are in those countries that want to avail themselves to the research that has benefited everybody.

 Blade: Among those who are participating in these ongoing AIDS vaccine trials, can we assume they cannot be taking the PrEP anti-retroviral drugs that have been shown to be highly effective in preventing HIV infection?

Dieffenbach: So, what we’ve done is we – everything is by conversation. So, when somebody who is interested in the study comes in, we talk to them. What is your chief interest in being in this study? And a lot of people want to be in the study because then they can access PrEP. They want to make it easier to get a hold of pre-exposure prophylaxis. They feel that is the best way that they can protect themselves.

So, in that situation, what we do is we take those people and link them to PrEP services where they can easily get PrEP in their community. So, first it’s taking care of those people. Then there are people who really have no interest in PrEP. And we actually counsel them every time they come in for a study. Are you sure you don’t want to access PrEP? And those are the people we then say, if you’re not interested in PrEP, what do you think about participating in a vaccine trial?

Because they’re the ones who have the most freedom of thought. They don’t have an opinion about the vaccine or about PrEP. So, those are the people we’ve been focusing on and enrolling. So, we’ve been very careful to make sure that if people wanted PrEP they not only have access, but they didn’t feel like somehow having to trade something in order to get it. The freedom to join a study should be a free choice. And it shouldn’t be a coercive thing to get PrEP. So, we just took that off the table and said if you’re truly interested in PrEP we can get you PrEP and make sure that was available. 

Blade: So, in that case, if they choose PrEP they would not be in the vaccine trial?

Dieffenbach: You know, it’s interesting that you ask it in that way. Because you have relationships with your community, many of the investigators have reported that people will say, you know I tried PrEP and it wasn’t for me. It made me gaseous. It upset my stomach. I wasn’t myself. I tried it. I couldn’t make it work for me. I want to stop PrEP. Am I still eligible for the [vaccine] study? And the answer is of course. Many people are very happy on PrEP and they come in for visits occasionally and say this is working for me and just have the relationship with the doctors there, so it works. So, again, it’s about maintaining contact with your communities.

Blade: Can you tell a little about what happens next after people become part of an HIV vaccine trial. Do you have to keep in touch with these people, and do they have to get an HIV test periodically?

Dieffenbach: Exactly. So, the vaccine consists of a series of injections. It’s a mixture of vector systems that delivers a series of encoded HIV genes that are specifically designed to induce very broad immunity. There’s a whole computer-based process to design those components of the vaccine to make sure that it has sequence similarities with all the different versions of HIV circulating in the globe. And then at the end there is a protein boost. And we carry this out.

So, about every three to four months people come in. They get a shot. They fill out questionnaires. They give a blood sample. And they’re tested for HIV and are given a boost or a placebo. And they stay in touch with the clinic. They come in and out of the clinic. And the retention is quite high in these situations because people really like having the attention of the clinic available to them. It’s part of the community.

Blade: So, they go to a clinic for all of this?

Dieffenbach: It’s a research clinic. It’s not like a state-run health clinic. It’s a research clinic. Clinic is just a term for where people are seen.

Blade: Are any of these AIDS vaccine trials that are going on taking place in the United States?

Dieffenbach: Yes. So, the study is called Mosaico. And it’s HVTN706. And we have sites throughout the United States as well as South America. But that study is limited to men who have sex with men – the one in the United States.

Blade: Is it broader than just men who have sex with men in other countries?

Dieffenbach: No, so we decided to really focus on specific at-risk populations. So, in the Americas we chose to focus on men who have sex with men and transgender individuals. And sub-Saharan Africa we focused on young women because that is the target of the study population. So, 705 is all women in sub-Saharan Africa. And in the Americas in North and South America it is all men who have sex with men and transgender individuals.

Blade: Can we assume that the researchers that are doing these studies have a sensitivity of LGBTQ people? Is there still an issue where people worry about being outed as being gay or transgender?

Dieffenbach: So, many of the sites that we work with have been part of our system for over 20 years. And so, they are trusted members of the LGBTQ community within their cities and states. And ‘states’ is a literal term where it’s a state in Colombia or Peru or Brazil. And so, it is part of the fabric of the gay community in these places. Just like in San Francisco the San Francisco health clinic and the DCF clinics are part and parcel of everything the community does there.

And so, the lead physician in San Francisco is Susan Buchbinder. She has been a leader in health in this population for over 25 years or actually closer to 30 years at this point. We’re all getting old. Do you know that? So, we have been at this a very long time. And really have tried to build structures that are durable and therefore are reliable to the community. And that’s where we go back to the same groups time after time.

Blade: Have the locations of the vaccine testing sites been released publicly?

Dieffenbach: Yes, all of that is publicly available on clinicaltrials.gov. If you go into clinicaltrials.gov and search HVTN705 or HVTN706 you will get a version of the protocol, all the times it’s been modified, where we are – the protocol. All of that is public knowledge and available to you. HVTN705 is the women’s study. HVTN706 is the men’s study.

Blade: Is there a timeframe for when these latest vaccine studies might be completed?

Dieffenbach: I think within the next several months. We will get an answer out of the women’s study and then the men’s study is probably a year away. We were slowed a little bit because of COVID. We actually had to pause enrollment for several months. But we’re back on track.

Blade: Isn’t there a parallel research effort for an HIV/AIDS cure?

Dieffenbach: Yes, we have a very large program in cure research. It is a lot earlier in the discovery process and so it’s still very ‘researchy.’ And we have a very large program called the Martin Delany Collaboratories for Cure Research. Martin Delany was an activist who really pushed NIH in so many wonderful ways to really take the need for a cure seriously. His argument was a cure is the next logical step after effective anti-retroviral therapy. You cannot stop with one pill once a day. You’ve got to keep going. And he was pretty persistent. And unfortunately, he died several years go and we just thought the best way to honor him, and his memory was to name a program after him.

Editor’s note: Next week, in the second and final installment of his interview with the Blade, Dr. Dieffenbach discusses the progress in research and studies into an HIV/AIDS cure and explains from a scientific standpoint why an HIV vaccine is taking longer to develop than a COVID vaccine.

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The White House

As house Democrats release Epstein photos, Garcia continues to demand DOJ transparency

Blade this week sat down with gay House Oversight Committee ranking member

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A photo released by the House Oversight Committee showing Donald Trump 's close relationship with Jeffrey Epstein . (Photo courtesy of the U.S. House Oversight Committee)

Democrats on the House Oversight Committee have released new photos from Jeffrey Epstein’s email and computer records, including images highlighting the relationship between President Donald Trump and the convicted sex offender.

Epstein, a wealthy financier, was found guilty of procuring a child for prostitution and sex trafficking, serving a 13-month prison sentence in 2008. At the time of his death in prison under mysterious circumstances, he was facing charges of sex trafficking and conspiracy to traffic minors.

Among those pictured in Epstein’s digital files are Trump, former President Bill Clinton, former Trump adviser Steve Bannon, actor and director Woody Allen, economist Larry Summers, lawyer Alan Dershowitz, entrepreneurs Richard Branson and Bill Gates, and Andrew Mountbatten-Windsor.

One photo shows Trump alongside Epstein and a woman at a Victoria’s Secret party in New York in 1997. American media outlets have published the image, while Getty Images identified the woman as model Ingrid Seynhaeve.

Oversight Committee Democrats are reviewing the full set of photos and plan to release additional images to the public in the coming days and weeks, emphasizing their commitment to protecting survivors’ identities.

With just a week left for the Justice Department to publish all files related to Epstein following the passage of the Epstein Files Transparency Act, which requires the Justice Department to release most records connected to Epstein investigations, the Washington Blade sat down with U.S. Rep. Robert Garcia (D-Calif.), the ranking member on the Oversight Committee to discuss the current push the release of more documents.

Garcia highlighted the committee’s commitment to transparency and accountability.

U.S. Rep. Robert Garcia (D-Calif.) during a sit down with the Washington Blade. (Washington Blade photo by Michael Key)

“We’ve said anything that we get we’re going to put out. We don’t care who is in the files … if you’ve harmed women and girls, then we’ve got to hold you accountable.”

He noted ongoing questions surrounding Trump’s relationship with Epstein, given their long history and the apparent break in friendship once Trump assumed public office.

“There’s been a lot of questions about … Donald Trump and Jeffrey Epstein. They were best friends for 10 years … met women there and girls.”

Prior to Trump’s presidency, it was widely reported that the two were friends who visited each other’s properties regularly. Additional reporting shows they socialized frequently throughout the 1990s and early 2000s, attending parties at Trump’s Mar-a-Lago resort in Florida and Epstein’s residences. Flight logs from an associate’s trial indicate Trump flew on Epstein’s private jet multiple times, and Epstein claimed Trump first had sex with his future wife, Melania Knauss, aboard the jet.

“We’ve provided evidence … [that leads to] questions about what the relationship was like between Donald Trump and Jeffrey Epstein.”

Garcia stressed the need for answers regarding the White House’s role in withholding information, questioning the sudden change in attitude toward releasing the files given Trump’s campaign promises.

“Why is the White House trying to cover this up? So if he’s not covering for himself … he’s covering up for his rich friends,” Garcia said. “Why the cover up? Who are you hiding for? I think that’s the question.”

He confirmed that Trump is definitively in the Epstein files, though the extent remains unknown, but will be uncovered soon.

“We know that Trump’s in them. Yeah, he’s been told. We know that Trump’s in them in some way. As far as the extent of it … we don’t know.”

Garcia emphasized accountability for all powerful figures implicated, regardless of financial status, political party, or personal connections.

“All these powerful men that are walking around right now … after abusing, in some cases, 14‑ and 15‑year‑old girls, they have to be held accountable,” he said. “There has to be justice for those survivors and the American public deserves the truth about who was involved in that.”

He added that while he is the ranking member, he will ensure the oversight committee will use all available political tools, including subpoenas — potentially even for the president. 

“We want to subpoena anyone that we can … everyone’s kind of on the table.”

He also emphasized accountability for all powerful figures implicated, regardless of financial status, political party, or relationship with the president.

“For me, they’re about justice and doing the right thing,” Garcia said. “This is about women who … were girls and children when they were being abused, trafficked, in some cases, raped. And these women deserve justice.”

“The survivors are strong.”

Deputy White House Press Secretary Abigail Jackson issued a statement regarding the release the photos, echoing previous comments from Republicans on the timing and framing of the photos by the Oversight Committee.

“Once again, House Democrats are selectively releasing cherry-picked photos with random redactions to try and create a false narrative,” Jackson said.

“The Democrat hoax against President Trump has been repeatedly debunked and the Trump administration has done more for Epstein’s victims than Democrats ever have by repeatedly calling for transparency, releasing thousands of pages of documents, and calling for further investigations into Epstein’s Democrat friends,”

In a press release on Friday, Garcia called for immediate DOJ action:

“It is time to end this White House cover-up and bring justice to the survivors of Jeffrey Epstein and his powerful friends. These disturbing photos raise even more questions about Epstein and his relationships with some of the most powerful men in the world. We will not rest until the American people get the truth. The Department of Justice must release all the files, NOW.”

Steve Bannon and Jeffrey Epstein in Epstein Files photo. (Photo courtesy of the U.S. House Oversight Committee)
Trump in another photo from Epstein’s digital files. (Photo courtesy of the U.S. House Oversight Committee)
(Photo courtesy of the U.S. House Oversight Committee)
Bill Gates and Andrew Montbatton-Windsor in Epstein Files photo. (Photo courtesy of the U.S. House Oversight Committee)
Bill Clinton, Ghislaine Maxwell and Jeffrey Epstein in Epstein Files photo.
(Photo courtesy of the U.S. House Oversight Committee)
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The White House

White House deadnames highest-ranking transgender official

Rachel Levine’s portrait altered at HHS

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Adm. Rachel Levine speaks at the International LGBTQ Leaders Conference on Dec. 2, 2021. (Washington Blade photo by Michael Key)

Admiral Rachel Levine — the first transgender person ever confirmed by the U.S. Senate and the highest-ranking trans official in American history — had her official portrait in the Humphrey Building altered, with staff replacing her correct name with her deadname, the name she has not used since 2011.

NPR first reported the change, and an HHS spokesperson confirmed to the outlet that Levine’s portrait had recently been altered. A digital photograph obtained by NPR shows Levine’s former (male) name typed on a placard beneath the portrait, placed under the glass of the frame.

Levine served as a four-star admiral in the U.S. Public Health Service Commissioned Corps under the Biden-Harris administration and was appointed the 17th assistant secretary for health.

During her tenure, Levine oversaw the Commissioned Corps and helped lead national public-health initiatives, including the federal COVID-19 response and vaccination strategy; efforts to address rising syphilis infection rates; HIV/AIDS prevention and treatment programs; and strategies to combat the opioid epidemic, particularly through expanded harm-reduction approaches for the communities most affected.

The Trump-Vance administration’s decision to publicly deadname Levine is widely viewed within the trans community as demeaning and disrespectful. The move comes amid a series of federal policy reversals targeting LGBTQ Americans, particularly trans youth seeking gender-affirming care.

Those actions include: weakening workplace protections for LGBTQ employees; limiting restroom access; downgrading gender-identity discrimination cases; pressuring hospitals to end gender-affirming care; cutting HIV research and prevention funding; removing LGBTQ crisis resources; restricting access to trans-inclusive medical policies for veterans and young people; supporting trans sports bans and threatening funding for teams that include trans athletes; and forcing schools and universities to eliminate DEI and LGBTQ offices, inclusive curricula, gender-neutral bathrooms, and books or training materials addressing LGBTQ issues.

The Trump–Vance administration has also expanded federal censorship by removing LGBTQ language from surveys, agency websites, Smithsonian materials, and human-rights reports; blocking Pride recognitions; creating federal communications that misgender trans women; imposing passport and travel barriers for trans Americans; lifting protections for trans service members; limiting benefits and care for LGBTQ veterans; and pressuring states, universities, and hospitals to end trans-inclusive policies under threat of losing federal research, education, or Medicaid funds. The administration has additionally deported LGBTQ asylum seekers to unsafe conditions, removed LGBTQ issues from global human-rights reporting, and escalated anti-trans rhetoric at public events.

These actions stand in stark contrast to Levine’s public-health record. As assistant secretary for health, she worked to expand LGBTQ+ health data collection, promote equitable vaccine distribution, strengthen national health-equity initiatives, and reduce care disparities experienced by historically underserved communities, including LGBTQ populations. Within HHS, she led councils and task forces dedicated to reducing structural barriers to care and improving community outcomes.

Before joining the federal government, Levine oversaw health and safety for nearly 13 million residents as Pennsylvania’s physician general from 2015–2017 and as Pennsylvania secretary of health from 2018–2021.

Rachel Levine‘s official portrait, which now bears her deadname. (Photo public domain)

Asked by NPR about the alteration of her official portrait, Levine responded that it had been an honor to serve as assistant secretary for health, adding: “I’m not going to comment on this type of petty action.”

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Health

The harsh truth about HIV phobia in gay dating

HIV and stigma remain baked into queer dating culture

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(Photo by Val Chaparro for Uncloseted Media)

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.

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