HIV

PrEP: Why it Isn’t Working for All of Us

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PrEP and Sexual and Gender Minorities

In a far-reaching effort to understand the factors contributing to HIV transmission among sexual and gender minority (SGM) individuals and improve HIV prevention strategies, a team of scientists at the CUNY Graduate School of Public Health and Health Policy (CUNY SPH) and the CUNY Institute for Implementation Science in Population Health (CUNY ISPH) led a four-year national cohort study of 6,059 cisgender men and transgender individuals who have sex with men. Key among their aims was uncovering the reasons why many SGM individuals are not fully benefitting from highly effective HIV Pre-Exposure Prophylaxis (PrEP).

PrEP is a powerful means of preventing HIV infection among groups that experience disproportional HIV burden, with the capacity to reduce transmission on a massive scale. It’s been available for over a decade, but its uptake among those who could benefit the most has been slow and inequitable, with significant racial and ethnic disparities – White SGM individuals have been adopting PrEP at higher rates than persons of color. Getting on PrEP is challenging, requiring regular clinical appointments, bloodwork, and pharmacy coordination. Staying on PrEP can be even more challenging, requiring continued access to healthcare through, for example, job stability that provides health insurance, as well as reliable transportation for PrEP-related appointments. Socioeconomic factors like housing instability further hinder consistent use. Substance use, particularly methamphetamine, amplifies HIV risk and can interfere with PrEP adherence.

The Together 5,000 (T5K) cohort study recruited 6,059 cisgender men and transgender individuals who have sex with men, aged 16-49, who were not using PrEP at enrollment but were clinically indicated for it, and followed them from 2017 – 2022. All were given an HIV test at study enrollment. Those with negative HIV tests were given information about PrEP and how it might protect them, and (if desired) help in beginning the regimen. The study examined potential factors associated with HIV infection, including demographic characteristics, socioeconomic status, behaviors, and PrEP usage. Participants completed annual online surveys and at-home self-sampling kits for HIV testing over four years.

In this cohort of HIV-vulnerable SGM individuals, the study team observed high HIV incidence over four years of follow-up (n=303, 5% of the cohort or 1.64% each year). PrEP use was a major factor in preventing HIV infection: individuals on PrEP were 80% less likely to become HIV positive. Notably, starting and then discontinuing PrEP proved to be a greater risk factor than never having started it: individuals who had started and then stopped PrEP had the highest rate of infection in the cohort. Prior studies have likewise found higher HIV infection risk following gaps in PrEP use.

Methamphetamine (meth) use in the past year increased risk of acquiring HIV infection by nearly four-fold. In fact, for every person who became infected, meth use was reported in the year prior 42% of the time. Findings from this and other studies demonstrate that meth use is disproportionately impacting SGM individuals from marginalized racial and ethnic groups, and accounts for one in three new HIV infections among SGM individuals.

“Our findings point to the urgent need to do more research into this potentially causal connection and provide more resources to people who use meth,” said CUNY SPH Professor Christian Grov, the study’s lead author.

Race and ethnicity played a role in HIV risk. Non-Hispanic Black and Hispanic/Latinx participants were significantly more likely to become infected than non-Hispanic white participants.

“Researchers and policymakers have feared for years that disproportionate PrEP uptake by race—where white individuals adopt PrEP at higher rates than other groups—would have the potential to make existing racial disparities in HIV even worse,” said Grov. “Thus, while our finding is not novel, it underscores the need for PrEP implementation strategies with more equitable reach that engage Black and Latinx SGM individuals.”

Housing instability increased risk. SGM individuals experiencing housing instability were at higher risk for both meth use and HIV infection. Greater education was, predictably, a protective factor.

“The findings related to meth use are particularly concerning given that SGM who use meth are increasingly injecting it, raising the possibility of increased infection risk through needle sharing in addition to any of the stimulant’s effects on sexual behavior,” said CUNY SPH Distinguished Professor Denis Nash, a co-author on the study.

The study highlights the critical need for interventions to improve PrEP uptake and retention among sexual and gender minority individuals, particularly Black/Latinx individuals, those with housing instability, lower education levels, and people who use methamphetamine. Enhanced PrEP implementation strategies and addressing structural barriers are essential for reducing HIV incidence in these vulnerable populations. Equally important are interventions to support the long-term maintenance of individuals currently on PrEP and to re-engage those who may fall out of care, given the exceptionally high risk of infection in these groups.

This study, led by CUNY SPH and CUNY ISPH, is the product of a broad collaboration with investigators from Florida International University, University of Massachusetts Boston, University of Florida, University of Memphis, Albert Einstein College of Medicine, Hunter College, SUNY Downstate, and Rutgers University.

Summer Health Tips for Gay & Bisexual Men (and all MSM)

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Summer Health Tips for Gay and Bisexual Men

Summer Health Tips for Gay Men: CDC
Monkeypox, | Meningococcal Disease | HIV & STIs | COVID 19

Summer is a time for fun, relaxation, and spending time with friends and family. This summer, however, in addition to ongoing COVID-19 transmission across the country among all populations; early data suggest that gay, bisexual, and other men who have sex with men make up a high number of new monkeypox and meningococcal disease cases. As you prepare to celebrate Pride and attend other celebrations, here are a few tips to keep you healthy:

Monkeypox

You may have heard of a rare disease called monkeypox. Many people affected in the current global outbreaks identify as gay or bisexual. Monkeypox can spread to anyone through close, personal, often skin-to-skin contact. If you have a new or unexplained rash or sores, see a healthcare provider and avoid sex or close, intimate contact until you have been checked out.

Learn more at www.cdc.gov/poxvirus/monkeypox.

Meningococcal Disease

There is an outbreak of meningococcal disease, primarily among gay and bi men in Florida. This can show up as fever, headache, stiff neck, nausea/vomiting, or dark purple rash, among other symptoms. Right now, the outbreak is in Florida. If you live or travel there, be aware of the symptoms and see a healthcare provider right away if you feel sick. If you live in Florida, get vaccinated. If you’re traveling to Florida, talk to your healthcare provider about getting vaccinated as well.

For more information, visit www.cdc.gov/meningococcal.

HIV & STIs

HIV and other sexually transmitted infections (STIs, sometimes called STDs), are always something sexually active gay and bi men need to be aware of. Remember, most STIs have no signs or symptoms. The only way to know your HIV or STI status is to get tested.

Learn more at  www.cdc.gov/hiv and www.cdc.gov/std.

To find a testing site for HIV, STIs and viral hepatitis, visit gettested.cdc.gov.

COVID-19

COVID-19 cases are still high in some places, and you are more likely to get COVID than anything else right now. Get vaccinated and stay up to date on your vaccines. Wear a well-fitting mask any time you’d like to, but especially if you are in an area with high community levels of COVID-19, you are in a crowded indoor area, or you want to protect someone who is at high risk for getting very sick.

Learn more: How to Protect Yourself & Others

Resources

Printable Cards: For in-person summer events, health departments, community based organizations, event organizers, and others can print and distribute this card to help gay and bisexual men get information on how to stay healthy and safe this summer.

San Francisco Hosts Largest Display of AIDS Memorial Quilt in a Decade

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AIDS Memorial Quilt

The National AIDS Memorial will mark the 35th anniversary of the AIDS Memorial Quilt with an historic outdoor display in Golden Gate Park that will feature nearly 3,000 hand-stitched panels of the Quilt.

The free public event will take place on June 11 & 12 from 10 am – 5 pm each day in Robin Williams Meadow and in the National AIDS Memorial Grove. Expected to draw thousands of people, the display will be the largest display of the Quilt in over a decade and the largest-ever in San Francisco history.

“This year’s historic community display will be a beautiful celebration of life and a recognition of the power of the Quilt today as a teaching tool for health and social justice,” said National AIDS Memorial CEO John Cunningham. “The Quilt is an important reminder that the HIV/AIDS crisis is still not over and there is much work to be done, particularly in communities of color, where HIV is on the rise in many parts of the country.” 

The two-day 35th Anniversary event, presented by Gilead Sciences, will feature 350 12’x12′ blocks of the Quilt laid out on the ground, each consisting of eight 3’x 6′ individually sewn panels that honor and remember the names and stories of loved ones lost to AIDS. Visitors will be able to walk through the display to experience each panel, remember the names, and see first-hand the stories sewn into each of them. Featured Quilt blocks will include many of the original panels made during the darkest days of the pandemic and panels made in recent years, a solemn reminder that the AIDS crisis is still not over.

“The Quilt remains an important symbol of hope, activism and remembrance that reaches millions of people each year, opening hearts and minds,” said Alex Kalomparis, Senior Vice President, Gilead Sciences, a long-time partner of the Quilt and its programs. The company provided a $2.4 million grant to the National AIDS Memorial in 2019 to relocate the Quilt from Atlanta back to San Francisco. “Through community displays such as this, the Quilt is connecting the story of HIV/AIDS to the issues faced by many people today, touching their lives in a very personal, compelling way.”

An opening ceremony and traditional Quilt unfolding will start at 9:30 am on the 11th, followed by the continuous reading of names of lives lost to AIDS aloud by volunteers, dignitaries, and the public on both days. There will be panel-making workshops, community information booths, stories behind the Quilt, displays of memorabilia, and the ability for the public to share their personal Quilt stories. Volunteer opportunities and community/corporate partnerships are available. The public is also invited to bring new panels that can be displayed in a special area to become part of the Quilt.  

More than 100 new panels will be seen for the first time at the San Francisco display. Many of them were made through the Memorial’s Call My Name panel-making program, which helps raise greater awareness about the impact of HIV/AIDS in communities of color, particularly in the South, where HIV rates are on the rise today. Panel-making workshops are organized around the country, working with church groups, quilting guilds and AIDS service organizations to continue the Quilt’s 35-year legacy of bringing people together and to serve as a catalyst for education and action by pulling the thread from then to now for justice. 

“The AIDS Quilt has always been an important part of Glide Memorial Church and many Black churches around the country. Throughout the years, we have made panels and displayed them from the pulpit as a backdrop to worship, with parishioners calling, singing, and preaching their names,” said Marvin White, Minister of Celebration at Glide. “We are honored to be a community partner of this historic display, to celebrate their lives and to share their stories so future generations always remember.” 

According to the latest Centers for Disease Control and Prevention data, while new HIV infections in the U.S. fell about 8% from 2015 to 2019, Black and Latino communities — particularly gay and bisexual men within those groups — continue to be disproportionately affected. In 2019, 26% of new HIV infections were among Black gay and bisexual men, 23% among Latino gay and bisexual men, and 45% among gay and bisexual men under the age of 35. African American and Hispanics/Latinos account for the largest increases in new HIV diagnoses, 42% and 27% respectively. Disparities also persist among women. Black women’s HIV infection rate is 11 times that of white women and four times that of Latina women. Racism, HIV stigma, homophobia, poverty, and barriers to health care continue to drive these disparities.

The first panels of the Quilt were created in June of 1987 when a group of strangers, led by gay rights activist Cleve Jones, gathered in a San Francisco storefront to document the lives they feared history would forget. This meeting of devoted friends, lovers and activists would serve as the foundation for The NAMES Project AIDS Memorial Quilt.  Each panel made was the size of a human grave and they saw the Quilt as an activist tool to push the government into taking action to end the epidemic.

“What started as a protest to demand action turned into a national movement that served as a wake-up call to the nation that thousands upon thousands of people were dying,” said Jones.  “Today, the Quilt is just as relevant and even more important, particularly in the wake of Covid-19, and the fact that the struggles we face today that result from health and social inequities are the issues we will face again in the future if we don’t learn from the lessons of the past.”

That year, the nearly 2,000 panels of the Quilt traveled to Washington, D.C. for its first display on the National Mall.  It then traveled to several cities, including a large display at the Moscone Center in San Francisco to raise funds for AIDS service organizations.

Today, the Quilt, considered the largest community arts project in the world, is under the stewardship of the National AIDS Memorial and has surpassed 50,000 individually sewn panels with more than 110,000 names stitched into its 54 tons of fabric. The Quilt continues to connect the history of the AIDS pandemic to the ongoing fight against stigma and prejudice through hundreds of community displays around the country and educational programs that reach millions of people each year. In 2021, an outdoor Quilt display system was constructed in the National AIDS Memorial Grove, located in Golden Gate Park, which allows for regular outdoor displays.

“Golden Gate Park has long been a place where history is made and where people come together for change, to heal and express themselves,” said Phil Ginsburg, general manager of the San Francisco Recreation and Park Department. “The National AIDS Memorial is an important part of that history, and we are honored to be part of this event that will bring thousands of people to our beloved park to honor a national treasure.”

A special web page at www.aidsmemorial.org has been created for the public to plan their visit to see the display that will be updated regularly with the latest details and information about this historic event.

SOURCE The National AIDS Memorial

AIDS activist Peter Staley on his memoir ‘Never Silent’ and friend Dr. Fauci

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Peter staley

Actions Speak Louder Than Words
AIDS activist Peter Staley on his memoir ‘Never Silent’ and friend Dr. Fauci
By Lawrence Ferber

A key member of AIDS activist group ACT UP and a named plaintiff in the ongoing lawsuit against Gilead and other pharma companies for illegally extending the patent of PrEP and HIV medication tenofovir, Peter Staley will tell you that his life is an open book. Yet it took years of nudging from friends, including Anderson Cooper, to actually write that book himself.

Released in October, Staley’s “Never Silent: ACT UP And My Life In Activism” (Chicago Review Press) is a jaw-droppingly frank 269-page read boasting a foreword by Anderson and back cover blurbs by Hillary Clinton and “Angels in America” playwright Tony Kushner.
While Staley’s experiences with activism and HIV — he was diagnosed with what they called “AIDS-related complex” in 1985 — comprised part of David France’s acclaimed 2012 documentary and 2016 book “How To Survive A Plague,” “Never Silent” details firsthand his personal highs and lows, including sexual and romantic, and his transformation from a closeted Wall Street bond trader to out-and-proud full-time activist. It includes some of ACT UP’s most outrageous, effective actions, like infiltrating big pharma and government offices and covering hateful GOP Senator Jesse Helms’ house in a giant condom.
The book also delves into the infighting that led to ACT UP splintering, Staley’s later crystal meth addiction and his subsequent (and outrageous) street poster campaign to combat its use, how he stopped the Oscar-winning movie “Dallas Buyers Club” from being subverted by an AIDS denialist screenwriter (Vanity Fair recently published a gripping excerpt:), and exploits with policy power players like Dr. Anthony Fauci.
Recently, Staley, who also co-founded and serves as secretary of PrEP4All, discussed the book’s numerous revelations, things he left out, Matthew McConaughey, and X-rated bucket list accomplishments.

How did you become friends with Anderson Cooper, and how did he encourage you to write a memoir?

Well, he was blown away by [the 2012 documentary] “How To Survive A Plague” and reached out by email and said, “If you ever want to get together, I’d really love that.” I jumped on that right away of course, and we had dinner and he gave me a tour of his house, I met the boyfriend, and that’s how it started. And within a week of that dinner he sent me a text: “You should write a memoir.” That’s when I disclosed to him how much I hated writing, and he said, “It’s not that bad; you write a little bit at night before bed and by the end of the year you’ve got half a book written.” My response was: “I’m not going to end my day doing something I hate. You don’t realize how much I hate it!” And I didn’t start writing until 2017 or 2018.

What was one mistake you wanted to avoid while writing this?

The biggest was being a blowhard. Overstating my importance. I think I’ve been pretty good at self-reflection most of my life, and I’m proud of what I’ve done, but I’m incredibly conscious of the fact that none of my first five years as an activist would have been noticed by anybody or made any difference if it wasn’t for the fact [that] I was just one member of a huge movement. 99.9 percent of my power derived from the collective for a good five years.

I was surprised by your level of frankness, especially regarding your sex life. The reveal that you contracted herpes even before your HIV diagnosis seems important, given how stigmatized that virus remains even today

Before AIDS, herpes was on the cover of Time magazine and people would commit suicide when they got a herpes diagnosis. It was AIDS before AIDS. It was a really horrifying diagnosis so, yeah, it was rough. But to be honest, I didn’t consciously think of that, to fight herpes stigma. You couldn’t tell my HIV seroconversion story without mentioning that’s how I found a doctor who helped save my life, [the late] Dr. Dan William.

Is there any progress on a herpes vaccine? It feels like doctors and pharma have just thrown their hands up.

It’s true. But if I [take acyclovir] every day I never have an outbreak. Acyclovir came out after my HIV diagnosis, and I asked if I should stay on it every day and my doctor said yes, so I’ve been on it every day since and have not had an outbreak.

You discuss your relationship with the late journalist and filmmaker Robert Hilferty, whose movie “Stop The Church” famously documented ACT UP’s “die-in” at St. Patrick’s Cathedral in 1989. However, you don’t mention his tragic suicide in 2009. Why is that?

I also don’t mention that Jef Mittleman, the beautiful Oberlin boy, died of an overdose, possibly a suicide — we don’t know — in a hotel room in NYC in 1994. The book is episodic, and each chapter tells of one specific action or period of time in my life, and if you were central to that narrative as I’m telling it, you’re in the book. It’s 99 percent me and 1 percent the people next to me. I don’t tell the rest of their stories, because that would chop up the narrative.

But I loved Robert. That grin and laugh, there was something a little wicked about the guy, like he always had some goods on you. He was really perceptive and could read a person so quickly, and my god he was sexy, and I don’t think he’ll mind a posthumous rating: he was incredible in bed!

Is there any story you left out and would, if you ever do a follow-up, include first?

Yeah, about a failed action, hopefully with a successful second attempt. I posted on Facebook in late August this cryptic message about how I was mourning the five-year passing of an action that failed, but might be reattempted. It involved dozens of people, a substantial budget, and was all very hush-hush. We managed to extract ourselves from the situation without getting arrested, and that allows us to attempt it again in the future. The issue [it addresses] has not gone away. But if I do a memoir in my ’80s, it’ll be in that one!

I understand you were firm on not wanting ACT UP to be in the main title. What other possibilities did you consider before settling on “Never Silent”?

I was scrambling for title ideas during the three years it took to write. A lot of memoirs use something personal that’s not obvious but you discover its meaning when reading the book. David France of all people suggested one that was like a lightbulb going off in my head: “Please Remain Calm.” You can hear me say it in “How to Survive a Plague,” and it became a funny line I would use whenever we invaded the offices of a pharmaceutical company. And it has a double meaning. I was known for not being one of ACT UP’s hotheads. I was not a screamer. My activism was always very politically driven and I rely on logic and model myself on Spock. But the publisher said no. The publisher wanted something obvious, and I’m always bad at reading the fine print in contracts, and in the publishing industry, unless you’re a Barack Obama, you have no say in the cover or title of your book!

I’m surprised that the publisher didn’t title it “Dr. Fauci’s BFF” or “Matthew McConaughey and Me”!

I met Jared Leto, but I never actually met McConaughey. “Dallas” and “Plague” came out at the same time, and we were at a couple of events together for the awards circuit and there was one moment I saw him leaving early, by the door alone waiting for his Uber, and I thought I’d go up to him and say, “Hey, Matthew, I’m the guy who caused so much trouble before you started shooting!” But I left him to his phone.

Speaking of Fauci, the final chapter is titled “Dinner With Tony,” which addresses his evolution from “tentative leader unwilling to rock the boat” during the 1980s to a good friend. Can you elaborate further on how he’s changed?

He slowly shed the widely held stubbornness of his peers in the scientific community that going slow and being methodical was sacrosanct. Without abandoning the basic tenets of high-quality scientific research, there are all sorts of inventive ways to speed things up and expand access at the same time. He applied many of those lessons to COVID-19.

Has he read the book yet?

He just got my book twice — an inscribed hardcopy for his bookshelf, and a Kindle version that’s easier on his old eyes.

What’s the biggest perk or upside of having your story told through movies and books over the past decade? Are there activist groupies?

I love the activist groupies! I wish they were a larger percentage of the community, but that’s what tipped the scales for me diving into writing. Not writing this book would be a lost opportunity, and that opportunity is inspiration because I’ve been contacted every week since 2012 by some millennial queer through social media [who] just saw “Plague” and it changed their life. A subset of them I stay in contact with and they’ve become activists, gone into medicine, or nonprofit work. That has blown my mind. They’re the ones who give me hope and I adore all of them.

Are shirtless pics welcome too?

Yes. Dick pics. And I will send one back! Another story I didn’t tell in the book was [filmmaker and artist] Gregg Bordowitz was working at GMHC [a NYC-based AIDS service organization formerly called Gay Men’s Health Crisis] and tasked with creating a series of X-rated safe sex videos that were funny and sexy and had lots of condoms and dental dams. This was 1989. He mentioned this to me and I said, “I’ll do it. I’m gonna die in a few years, I want to do porn. It was on my bucket list, what the fuck do I care? I gave up the dream of being president someday!” So I did a safe-sex short and that summer they premiered the video as part of the international AIDS conference in Montreal on a gigantic screen, and every AIDS activist in the country was there. I’m in the audience slumping down, my hands over my eyes. [Laughs.] If you dig far enough, you can find it! It was actually part of Gregg’s exhibition at MoMA PS1 this year! My erect penis was in a museum! Bucket list!

‘The Eyes of Tammy Faye’ recreates a historic interview with a man living with AIDS

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In the Eyes of Tammy Faye

By Mark King

At the height of their 1980s popularity, Jim and Tammy Faye Bakker were television evangelist royalty, hosting multiple shows and raking in cash from their on-air collection plates. Tammy Faye, however, also had an expansive view of love and acceptance, despite her conservative Christian roots.

She proved it in 1985 when she had a gay man living with AIDS, Steve Pieters, as a guest on her show, Tammy’s House Party. The interview is recreated in the new film The Eyes of Tammy Faye, about the rise and fall of the Bakkers. It premieres September 17 and stars Jessica Chastain as Tammy Faye and Andrew Garfield as Jim.

Pieters spoke with POZ magazine about the original interview, which is available on YouTube, and the new film.

It’s amazing that of all the events in Tammy Faye’s life, the filmmakers chose to include her interview with you.

I’m thrilled that they did. I’m touched and honored.

The film The Eyes of Tammy Faye recreates the original Steve Pieters interview

Tammy Faye Bakker interviews Steve Pieters on her show Tammy’s House Party in 1985.YouTube

It’s ironic that the gay man they found was also a theologian and pastor.

Yes. I was a pastor at the time with [the LGBTQ-affirming] Metropolitan Community Church [MCC], and I had been speaking about living with AIDS for two years or more. I made sure the interview went out live so they couldn’t edit it. It was a kick.

But it was a conservative environment. When did you realize it was friendly ground?

Tammy’s producer had been very friendly. She reassured me that Tammy was proud and excited to be the first to give an affirming interview to a gay man with AIDS.

You also kept bringing the topic back to your faith. When she asked you if you had given women “a chance,” you said God loves you the way you are.

I did that quite deliberately. She had said [before we went on air] that “we don’t talk about Jesus” on this show. And then, of course, we ended up talking about Jesus a lot.

It’s also surprising, frankly, that the person living with AIDS who did that interview in 1985 is still alive to talk about it.

I know! I got sick in 1982 and was diagnosed with GRID [gay-related immunodeficiency, a diagnosis used prior to the discovery of HIV]. They told me I had eight months left to live.

There’s no rhyme or reason to it, is there? Who was empowered, who fought hard, who lived, who died, in those early years.

Yes, absolutely. When I think about all those amazing people who were killed…

What was the initial response from folks to your interview?

Not much. It wasn’t until 1987, when the Reverend Troy Perry played the interview at a general conference for MCC and 1,000 people stood up and cheered, that I got much of a response.

I was so shocked. After that, I traveled for 12 years all over the world, and they always wanted me to show that interview at church events. Everyone wanted to see it.

The trailer for The Eyes of Tammy Faye gives viewers the impression that she was really going rogue with her interview with you. It didn’t please the conservatives in power. She wasn’t sticking to the political script of homosexuals being a threat to Christianity and democracy.

Absolutely. I don’t know if it was because she had a good heart or because she wanted to be known as someone who did something radical. I don’t know. But I’m told this was not the first time she had talked to a gay man.

The new film explores the mystery of Tammy Faye, meaning whether she was just playing a role or whether she was, in fact, an innocent who loved the Lord. If her constant cheerfulness and loving attitude was a persona, she never, ever dropped it.

I know she treated me like a real human being. She was very compassionate. It seemed very sincere.

Her son, Jay Bakker, and I have talked the last couple of years, and he tells me that my interview changed her, and it changed the whole family.

After that interview, she decided that she had a calling to minister to the LGBT community.

She started taking her kids to MCC services and to Pride parades and to hospices to meet people with AIDS who were sick and dying. Jay said it completely changed their attitudes and her direction in ministry.

Was Jim Bakker involved in any of this?

Jay Bakker tells me that his father was all for having the interview done.

They did decide, though, that it should be broadcast on Tammy’s House Party, rather than on their flagship show, The PTL Club [PTL stood for “praise the Lord”]. They thought it would go better if it were on her show.

Now, all of these decades later, the notoriety of doing this interview is all going to come up again. There’s an actor, Randy Havens, playing you in a major Hollywood film. How does that make you feel?

I’m thrilled about it. I got a note from the producer saying that her interview with me figures very prominently in the plot.

Did the producers of the film approach you beforehand to ask your thoughts, then and now, about the interview? Did you even know that the film was happening?

No. I was on Jay Bakker’s podcast, Loosen The Bible Belt, and he told me about the movie.

He said that the actress Jessica Chastain, who plays Tammy Faye, told him that the interview was central to the plot. Jessica decided to do the film because of that interview in the plot.

The producers apparently thought that I was no longer living. Because the interview is on YouTube, I’m considered to be a historic figure, so they don’t have to ask my permission to do it. I wasn’t even aware of it until after the film was in the can.

The film The Eyes of Tammy Faye recreates the original Steve Pieters interview

Steve Pieters Courtesy of Steve Pieters

What are your apprehensions?

There is a little bit of fear in me that this is what’s going to be the lead in my obituary.

This interview and now this film is what I’m going to be remembered for, not that I survived AIDS or was a director of AIDS ministries but that I was that gay pastor with AIDS who did that interview. Which is OK, I could be remembered for a lot worse.

To have represented a community so well on a national television show that became kind of infamous? That’s a great lead for anyone’s obituary. And the interview eventually became your calling card. Look at all the great work you were able to do as a result of that moment. It accelerated your career in advocacy as well as your ministry.

It definitely raised my profile. And I’ve had people over the years come up to me and say that that interview saved their life or that they never realized they could be gay and Christian. I had one person tell me that he was seriously contemplating suicide, and the interview changed his mind.

It is a fascinating slice of HIV/AIDS history. It deserves to be remembered. And for what it meant for representation of people living with HIV and the marvelous work it helped you do and for the lives it changed, it deserves to be the lead in your obituary—if that turns out to be the case.

That’s true. It was a big deal. And I didn’t even know it at the time.

Meeting at Larry Kramer’s House as a Pandemic Began

by
AIDS Activist Andy Humm

Positive Thoughts
40 Years Ago: Meeting at Larry Kramer’s House as a Pandemic Began
By Andy Humm

Something was killing us gay men in 1981 and no one knew what was causing it. That summer there was one alarming article about it in The New York Times on July 3 (“RARE CANCER SEEN IN 41 HOMOSEXUALS”) based on a CDC report and two articles by out gay Dr. Larry Mass in the gay New York Native, including “CANCER IN THE GAY COMMUNITY.” While there were many gay groups in those days none of us stepped up to coordinate a community-wide response whether through a sense that health authorities would address it (ha!) as they did with Legionnaire’s Disease in 1976 or fear that a community that had just officially ditched the mental illness label in 1973 would now be linked with a deadly physical malady.

It took Larry Kramer, an Oscar-nominated screenwriter (for Women in Love), to bring us together. These cases hit his friends in the Fire Island fast lane hard. I only knew him as the author of the secret-spilling novel Faggots that had been condemned in gay movement circles.

Larry had also written an op-ed piece in the Times after the assassination of Harvey Milk in 1978 praising gay political muscle in San Francisco and condemning his hometown: “We are not ready for our rights in New York. We have not earned them. We have not fought for them.” (“Fuck him,” I thought at the time as a spokesperson for the 50-group Coalition for Lesbian and Gay Rights that campaigned for our gay rights bill. We had the votes for it in Manhattan — a much larger place than San Francisco — in 1971 when the Gay Activists Alliance first conceived it. But Queens was then Archie Bunker territory. And Staten Island? Fuhgeddaboudit. Who is this guy who has never been to one of our meetings?)

But when Larry wanted to get things moving, he called everyone he knew — friend and foe — and many who he did not. So as one of the “gay leaders” he looked down on, I got invited to a packed gathering at his Washington Square apartment on August 11, 1981, to hear from the doctor quoted in the Times, Alvin Friedman-Kien. Larry wanted us to raise money for research since none was forthcoming from government.

If all you know about this was Larry’s dramatization of it in the HBO version of The Normal Heart you don’t know what happened. (It is not in his searing stage version.) On HBO, a doctor is explaining what she is seeing with gay patients and flippant gay men are shouting, “C’mon, honey. I have an orgy to get to.”

As Larry later wrote more about the devastation of AIDS, he was indeed vilified by some for being “anti-sex” for saying things like, “Just stop fucking!” But at that gathering 40 years ago we listened intently, respectfully, and full of dread as the soft-spoken Dr. Friedman-Kien described the devastation he was seeing in his practice and hearing from other physicians treating gay men. You could have heard a pin drop.

We did not know what was causing clusters of deadly pneumocystis carinii pneumonia and the disfiguring purple lesions of Kaposi’s Sarcoma, an otherwise slow-moving cancer mainly of older Mediterranean men. We knew the gay patients were immunosuppressed but not why. Recreational drug use? Multiple STIs from multiple partners? There was even speculation about a viral agent — a prospect too frightening to contemplate with its attendant threat of quarantine. But the conclusive identification of HIV as cause would not come until three years later. We needed research.

If memory serves, Larry passed the hat at that gathering. I recall going back to Dignity, the gay Catholic group I still belonged to, and reproducing Dr. Mass’s article for our 300 members. At the next board meeting we voted for a $1,000 donation to this research effort — a very large sum in those days in a community with very little tradition of philanthropy. Most gay people were afraid to write checks to gay causes lest it expose them in a deeply homophobic culture.

Larry himself reportedly went to Fire Island and stood on the dock with a tin can to collect money for the effort and netted a total of $60. He did organize his friends into forming the Gay Men’s Health Crisis — but that would not be incorporated until 1982 to provide services and education that the government was not. He wanted GMHC to be much more aggressive in its advocacy to the point that he got removed from the board — a turn of events well-portrayed in his play, The Normal Heart.

Why wasn’t our response quick and intense? Some of it was denial and fear. You can see that now in the early lack of response to the devastating COVID pandemic today. The reports out of Wuhan in the early winter of 2019-20 ought to have put a worldwide public health response into action immediately. But we dithered and wished it away instead. (I have a copy of the New Yorker magazine a month before the city was locked down and there is not one word about COVID.)

In 1981, this was hitting us when we were still “pre-teenage” as a movement. It had only been 12 years since the Stonewall Rebellion and while that had sparked an explosion in gay activism, we were still a relatively powerless, underfunded, and mostly volunteer movement. Most gay people were not out — they just hoped to be left alone. I wrote for the gay New York City News back then and it was months before the health crisis became a regular subject. We did step up the fight for gay rights because without civil rights how were we to get the system to respond to our health crisis?

The Times and other mainstream media ignored it. There was no national TV news feature on it until Joe Lovett’s piece on ABC’s 20/20 in 1983 — the same year Michael Callen and Richard Berkowitz published “How to Have Sex in an Epidemic” based on the limited knowledge we had then and when GMHC was able to fill Madison Square Garden for a celebrity-studded circus benefit. Dr. Mass did keep writing about it for the Native but had an article (“The Most Important New Public Health Problem in the United States”) rejected by the Village Voice.

We did pass the city gay rights bill in 1986 and I went into AIDS education for youth at the Hetrick-Martin Institute. By 1987 though — impatient with the community’s response to “the plague” — Kramer gave the speech that led to the formation of ACT UP. Activism — fueled by desperate, dying people — got into high gear. But it would not be until 1995 that effective treatments were developed, by which time millions had died and millions more had been infected.

Politicians and human beings in general are loathe to admit they have a plague in their midst. That’s how they get out of control. The question about so many challenges we now face — from the pandemic to climate change — is when we are going to trade some short-term comfort for long-term survival. Those meetings need to be convened everywhere — from dinner tables to town halls to Congress.

Andy Humm, a gay activist since 1974, has been co-host with Ann Northrop of the weekly national GAY USA television show since 1985. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBTQ+ wire service. Visit their websites – http://thebody.com, http://hivplusmag.com, http://positivelyaware.com and http://poz.com – for the latest updates on HIV/AIDS.

Kayla Quimbley Joins Presidential Advisory Committee on HIV/AIDS

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Kayla Quimbley

On August 4, 2021, Assistant Secretary for Health, Dr. Rachel Levine, swore in eight new members to the Presidential Advisory Council on HIV/AIDS (PACHA), one of the newest members being Kayla Quimbley, a Georgia Equality Youth HIV Policy Advisor and youth HIV advocate.

Quimbley, as a Youth HIV Policy Advisor, is trained on policy and advocacy while being equipped with the resources needed to educate state, city, and county-level policymakers around the creation of meaningful HIV- related laws and strategy.

According to www.hiv.gov, “The PACHA provides advice, information, and recommendations to the Secretary of Health and Human Services regarding programs, policies, and research to promote effective prevention, treatment, and cure of HIV disease and AIDS. This includes recommendations to the Secretary regarding the development and implementation of the Ending the HIV Epidemic in the U.S. initiative and the HIV National Strategic Plan.”

As a member of Advocates’ Engaging Communities around HIV Organizing (ECHO) council and as a National Youth HIV AIDS Awareness Day Ambassador, Quimbley is utilizing her skills, and lived experience, to eradicate HIV stigma, reduce the number of new HIV transmissions, and directly influence policy change.

Quimbley has dedicated herself to raising awareness of how HIV disproportionately impacts youth of color and continuously works to ensure that youth have access to medically accurate information.

Georgia Equality celebrates Kayla Quimbley for her dedication and is a true inspiration. We know she will be an assest to the PACHA.

Positive Thoughts: The Activist Doctor

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Demetre Daskalakis

Demetre Daskalakis, MD, MPH, is tackling HIV prevention nationally
By Alicia Green

Demetre Daskalakis, MD, MPH, remembers the day he felt called to become an HIV doctor: April 23, 1995. He was a college student working on a display for the AIDS Memorial Quilt when he witnessed people paying homage to their lost loved ones.

“I remember saying, ‘My job is to not let anybody get sick or die from HIV/AIDS,’” says Daskalakis, the director of the Division of HIV/AIDS Prevention at the Centers for Disease Control and Prevention (CDC).

But Daskalakis, 47, is not your average doctor — he’s also a gay activist with strong ties to the LGBTQ+ community.

“When I realized that the single largest health threat to my community was HIV, the intersection became really clear for me,” Daskalakis explains. “It’s important and possible to be both a physician and an activist and to work in government and have an activist heart.”

For eight years, he was an attending physician at the New York University School of Medicine before serving as the medical director of three HIV clinics at Mount Sinai hospital.

In 2014, Daskalakis joined the New York City health department as assistant commissioner of HIV/AIDS prevention and control, his first job in public health.

Daskalakis was promoted to deputy commissioner of disease control in 2017. During his three years in that role, he led NYC’s “Ending the Epidemic” initiative and helped reduce HIV diagnoses to a historic low.

Having effectively reduced HIV transmissions and deaths in America’s largest city, Daskalakis is now tackling HIV at the national level. Since December 2020, Daskalakis has led HIV prevention efforts at the CDC. He aims to apply what he learned in New York City to the epidemic across the country.

Health equity is top of mind for Daskalakis. He plans to identify ways to improve HIV outcomes for all by interrupting racism, sexism and other isms. Additionally, as the senior COVID-19 data and engagement equity lead at the CDC, he has been tasked with ensuring a fair and equal distribution of COVID-19 vaccines. 

“We also want to really identify ways that we can cross-link HIV with STDs [sexually transmitted diseases] and viral hepatitis as well as mental health and drug user health to be able to achieve a more global approach to addressing syndemics,” he explains.

Daskalakis also hopes to eliminate the divide between people living with HIV and those who could benefit from prevention strategies through what he calls “status-neutral care” — giving patients the same initial treatment and care regardless of HIV status.

“The status-neutral framework is addressing stigma at its root,” he says. “Let’s not worry about building a service based on a test result. Let’s worry about who the people are and what we can do to make them comfortable getting services and care.”

Despite being called a “radical doctor” (for doing outreach at sex clubs, for example), Daskalakis insists that what makes him stand out in the fight against HIV is his love for the communities affected by the virus.

“All I’ve ever done is listen and learn,” Daskalakis says. “When you listen to the community and the science and figure out how to marry them, really good things happen.”

Alicia Green is an assistant editor for POZ. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBTQ+ wire service. Visit their websites – http://thebody.com, http://hivplusmag.com, http://positivelyaware.com and http://poz.com – for the latest updates on HIV/AIDS.

HIV & Aging in San Francisco

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HIV & Aging

Older adults living with HIV in San Francisco face staggeringly high rates of mental health issues and levels of loneliness, as well as experience a dire need for regular social connections and health care coordination, according to a landmark new report by the ACRIA Center on HIV and Aging at GMHC released Sunday.

The report, issued as the first part of the multi-site Research on Older Adults with HIV (ROAH) 2.0 project, demonstrates in stark terms that living with HIV as an older adult presents a unique set of challenges—and requires a complex set of coordinated solutions. More than 50% of all people living with HIV in the United States are age 50 and older, and by 2020, 65-70% of people living with HIV will be age 50 and older.

“While there is increased awareness that there is a critical need for both more services for, and more research about, older adults living with and affected by HIV, our nation is not fully prepared for the medical and social implications of the growth of this population,” said Stephen Karpiak, PhD, Senior Director for Research for the ACRIA Centers at GMHC and a Co-Principal Investigator of ROAH 2.0. “We hope that the fresh insights from this timely study—which come just as adults age 50 and over are becoming the majority of all people with HIV in the United States—will inspire action to address the many challenges older adults with HIV face.”

In San Francisco, where 65% of people living with HIV are age 50 or over and the cost of living is among the highest in the country, the need to know more about older adults with HIV is particularly pressing.  Though most participants reported that their HIV is well managed and that their health is “excellent” or “good,” 41% reported that their health is “fair,” “poor,” or “very poor.” They also reported a high burden of physical symptoms and diseases other than HIV.

Furthermore, survey participants said that they contend with hunger, low income, and burdensome housing costs. Many also said they lack ways to get help with the activities of daily living or care should they fall sick or be injured.

The findings of the report underline the importance of providing older adults with HIV with medical services guided by the principles of geriatric medicine (an approach tailored to the complex needs of older adults with multiple chronic conditions, e.g., multimorbidity and associated risks of polypharmacy), enhanced access to mental health treatment and social support, trauma-informed care that acknowledges the repercussions of a history of trauma and avoids re-traumatization, and programs to help ease the financial burden of living in a high-cost city on a low fixed income.

Other notable findings in the San Francisco ROAH 2.0 study include:

  • Rates of depression and PTSD were extremely high: 38% of participants scored as having moderate to severe depression and 35% scored as having post-traumatic stress disorder (PTSD) using conservative criteria. About half (51%) of the participants reported childhood sexual abuse.
  • Participants show a high prevalence of multimorbidity (having two or more chronic illnesses). They report a heavy burden of illness and physical symptoms: On average, they reported experiencing seven symptoms or diseases besides HIV in the past year. Data shows that the older adult with HIV is evidencing higher rates of illnesses typically associated with aging (cancers, cardiovascular disease, osteoporosis, kidney disease, liver disease, diabetes). Multimorbidity is associated with elevated risk for polypharmacy.
  • Three-quarters of participants said their needs for emotional support were not fully met, and just over one-fifth said they needed “a lot more social support.”
  • The most frequent need among participants (and the need that was most often unmet) was having opportunities to socialize or meet others.
  • Nearly 60% of the participants reported that their housing costs account for about half, or more than half, of their income.
  • A brief assessment showed that 19% of participants were food insecure (meaning they have uncertain or insufficient access to food) and 25% experienced both food insecurity and hunger.

The full study, a successor to a pivotal ACRIA study of 1,000 older adults with HIV in New York City in 2006, will ultimately include almost 3,000 older adults living with HIV in sites across the United States, including New York City, Upstate New York, Chicago, and Alameda County (the East Bay), as well as San Francisco. Results will help social researchers and care providers across the country develop more services geared specifically toward people living with HIV who are over the age of 50.

“GMHC is committed to being a national leader in the study of older adults living with HIV as we all start to fully grasp the enormity of the challenges faced by the 50-and-over population living with HIV,” said GMHC CEO Kelsey Louie. “We hope that service organizations across the country will start to use these findings as they develop services and interventions designed to help this population. Since entering into a strategic partnership with ACRIA in 2017, GMHC has redoubled its efforts to work collaboratively with our older adult communities, launching the Terry Brenneis Hub for Long-Term Survivors earlier this year, relaunching GMHC’s pivotal Buddy Program, and using new data to better tailor our services. We look forward to shepherding more vital research that will help us provide the best possible holistic care for our older clients.

HIV and Aging in San Francisco: Research on Older Adults with HIV in San Francisco.

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Sitting at the Table: Medical Research Advocacy

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Sitting at the Table

Your voice matters. As a community activist your voice is needed when it comes to medical research, especially when researchers are recruiting trial participants from your community or trying to address health issues that impact your community.

Sitting at the table for the first time, however, can be intimidating. Many years ago, JD Davids put together these tips for Project TEACH, with help from Charles Nelson, Kiyoshi Kuromiya, and Jane Shull. These tips remain as relevant today as they were when they were first written.

1. Remember the people who aren’t in the room: You are there to represent your community, not to impress the other people at the table. You must be clear about what your community needs and wants, and report back information to people who are not there. If you are sitting on a scientific committee designing research, you don’t have to be a scientist — you need to think about and talk about how their research will affect your community. Don’t be afraid to go back and ask your community what they think.

2. Set goals to focus your participation: Your homework is to know the issue, and figure out how it affects you and your community. What can this group or committee do about this issue? Your goals must be clear, wellthought out, and possible for this group of individuals to do at this time. You can have goals for each meeting, and overall goals for the committee’s work. What goals must be met, and what goals are you willing to compromise in order to win the most important things? Discuss these with your contacts and supporters. If you learn more or situations change, look again at your goals and change them if necessary.

3. Be truly present: You need to be there physically, mentally, and emotionally. The first key to this is showing up. Go to all the meetings. If they do not meet at times you can attend, demand that the times change, or find someone else to take your place. If they communicate through conference calls, be on all the calls, or you may miss important information.

Listen to everything. It is not helpful for you to demand an answer to a question that was already answered 10 minutes ago. Try your best to keep track of the conversation. If you ask a question, you must listen to the answer — do not assume you know what they are going to say. It is very easy to get distracted, especially on conference calls. Try to notice when you are not listening, and learn to concentrate on what is going on. Bring a tape recorder if you have trouble remembering the details or taking notes, and review it later.

Stay awake. If you find yourself getting sleepy, stand up or walk around if possible. Go to the bathroom and splash cold water on your face. Don’t load up on coffee and sweets — it can just lead to a crash. Snacks like nuts and fruit can give you a better energy boost.

Focus on what you do understand, not what you don’t yet understand. It is easy to become discouraged, but remember that you have support and can learn. Picture ideas in your head at first, rather than trying to write down details, especially with scientific and treatment issues.

4. Make all your comments and get your questions answered, sooner or later: You always have the right to ask questions. If you do not understand something, and no one is helping you, interrupt the meeting and demand an explanation. If you have a comment to make, do not let the conversation or meeting end until that comment is made.

If you ask a question, and feel that it was not answered all the way, point that out. If you still feel like you are getting the run-around, you have to make a decision — should you continue to interrupt the meeting, or will you give up for now and get your answer later from one of your contacts? Either decision is the right one at different times — it will become easier to tell with experience.

If you are not sure of how to say something important or sensitive during a meeting, make yourself a note. Then work with your contacts and supporters afterwards to write a letter to all the committee members, stating your position, and email or fax it to them or bring it to the next meeting.

Don’t be afraid of disagreements, even with your contacts and allies. A good working relationship can include arguments, so people know where you stand and that they can’t walk over you. Do stay open and honest without making personal attacks.

Sometimes you may have to pick your battles, and let things go if you can get an answer outside the meeting, or come back with a stronger suggestion or proposal next time. Remember, you are there to meet your goals, in order to help your community. If you call someone a “murderer” the first time you have a minor disagreement or because they say something dumb, they may never listen to anything you say again. Some people will say ignorant or offensive things to distract you from the real issues — don’t fall for it.

Avoid making up facts and figures. You may get caught. If you are pretty sure, say “I think that…” or “I believe that…”, and hope that someone else in the room can back you up. Or write a note to a contact near-by, asking if they know and can make the point. Sometimes you may need to bluff to bring out an important issue or make a point. You can act like you know the details without saying any. Use words like “approximately,” “about,” or “roughly” to describe your best guess, as in “About half the people dropped out of the study because of side effects. Obviously there is a problem here.”

5. Get in on the details. Most of your goals may be for big issues and decisions. But smaller things can make a large difference, too. Sometimes the people who write the final wording of a policy or decision have the most power. Do not give your okay for a general statement and go home — help write it, or demand to see a copy before it is made final or sent out!