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Anti-PrEP Scare Tactics

Secret App

Anti-PrEP hysteria is hitting new lows, with attempts to frighten early adopters of Truvada PrEP, the pill that is highly effective at blocking HIV infections. In what almost became a story in The New York Times, someone used the new and highly popular social media app called "Secret" to freak out its many gay users. He claimed that after using PrEP every day for over six months, he had just tested positive for HIV, and he included lots of specifics about his testing history and current doctor visits. 

"Secret" is an app that allows users to anonymously post and comment on anything, kind of like Facebook stripped of actual usernames. This particular "secret" quickly generated over 100 comments, like "how is that possible," "bullshit," and "I'm on PrEP too, so I hope this isn't true." He was peppered with many worried questions, and answered them in detail over the next few days. Alas, one of those details made the entire story hard to believe. Two days after getting the news, he supposedly returned to his doc for follow-up test results, and was told he'd been "infected with a non wild strain ... resistant to Tenofovir and Emtricitabine" (the two anti-HIV meds in Truvada).

But here's the rub -- a phenotype or genotype HIV resistance test takes at least one to two weeks before the results come back. Guess he missed that fact when he Googled "Tenofovir and Emtricitabine" (correctly spelled, which would be a first for someone jotting down drug names at a doctor's office).

A few days later, the guy deleted the entire thread, which included inquiries from a Times reporter. Damage done.

Think that's scary? How about the next plague that's coming, or could even be spreading now (right now!) by all those condomless PrEP users? This particular scare tactic is appearing online with increasing frequency. It's based on an unavoidable truth -- mankind will indeed encounter new pathogens that cause disease, even widespread death. When will the next animal virus out there make the leap to humans, and how much damage will its mutations cause? Want to avoid the next plague? Wear condoms!

The problem with this scare tactic is that its prescription doesn't make sense. Until we identify the next deadly pathogen, we won't know which prevention methods work against it. That's why the scientific community preaches heightened detection and reporting as the rational public health response to future pathogens. We have to find them early, and then react quickly. How will a condom prevent a super-virulent swine flu virus? What if the next killer is more like HPV than HIV, and spreads easily via oral sex and vaginal sex? 

In other words, why aren't those screaming at gay men to wear condoms to avoid the next plague also insisting that straight people always use condoms? Shouldn't the world quickly set-up test-tube baby clinics, since the standard means of procreation (condomless sex) could spread the next mass killer? 

Of course not, and you'll never hear the next-plaguers suggest this. Isn't it interesting that their only prescription is that gay men, and only gay men, need to abandon condomless sex forever? Can you say self-loathing? 

As for fighting our current plague, I've said it before, so I'll say it again:

"While the gay men who moralize and finger-wag will most definitely slow us down, AIDS activists and their public health allies will ultimately win this war. So if you're fighting the good fight, and getting any stigmatizing pushback, then push ahead even harder. Give a good smack to that finger in your face, ignore the moralizing idiots online, and find strength from your allies in this fight. And know this -- when this crisis is finally over, there will be two kinds of people remembered: those who fought to end it, and those who slowed us down."

25 Years Ago: ACT UP's AIDS Treatment Research Agenda

Peter Staley Montreal AIDS Conference 1989
ACT UP's press conference at the International AIDS Conference in Montreal, June, 1989

25 years ago today, the Fifth International AIDS Conference closed in Montreal, and AIDS activism changed forever. The white coats -- the medical establishment that controlled our destinies -- realized they could no longer ignore us. People living with HIV and their fellow advocates pushed their way into the conference (literally, during the opening ceremony), and came armed with a sophisticated analysis of the sorry state of AIDS treatment research.

ACT UP New York's Treatment & Data Committee released a fifteen page report titled A National AIDS Treatment Agenda that wowed the researchers in attendance. I have so many powerful memories from that conference, but one, completely-unrecorded event stands out. If the annual international AIDS conferences had "A-Lists," then the must-attend A-lister event each year was always amfAR's big invitation-only reception. Since most of the T&D boys had slept with many of amfAR's young staffers, we easily procured some invites. As I worked the room, it became obvious that everyone was buzzing about ACT UP's report. I circled back to Mark Harrington, and we marveled at what felt like a pivotal moment for AIDS activism. We had no only demanded a seat at the table, we had earned it.

To my knowledge, the report has never been posted online. I've uploaded a PDF version here.

Tomorrow, at a meeting at the CDC, ACT UP will be releasing another document titled The Atlanta Principles, which will offer an analysis of what's wrong with today's HIV prevention efforts, and a plan for fixing them. With new infections tragically stuck at almost 50,000 a year in the U.S. -- a statistic that hasn't budged since the early 1990's -- it's a national disgrace that we've never tackled preventing HIV, like we did with treating it. Mark my words, that's about to change.

Undetectable = Uninfectious

We are not infectious, or dangerous, or criminals.

"The main news is that in the PARTNER Study so far there have been no transmissions within couples from a partner with an undetectable viral load, in what was estimated as 16,400 occasions of sex in the gay men and 14,000 in the heterosexuals."

Please read about this newly released study:

Gay-on-Gay Shaming: The New HIV War

Here are salvos from a new battle: Calling a young, HIV-negative gay man a "Truvada whore" simply for choosing a prevention option with a higher efficacy rate than condoms. Becoming indignant when someone says AIDS is still a gay problem. Turning to the police when you find out the guy that just jilted you is HIV-positive. Putting "I'm clean, ub2" in your online profile. Joining digital stonings via online comment sections when a 20-something dares to come out as HIV-positive. HIV-negative guys barebacking with those who tell them they are negative and shunning the few brave ones who admit they're positive. These are just some of the examples of the new HIV war, with its gay-on-gay shaming.

2014-02-26-StigmaProject.jpgHIV-related stigma is worse than ever. Not the external kind, where a society is panicked about the new plague. Thankfully, the days of being shunned by hospital orderlies or funeral homes are over. But I'd prefer that kind of stigma over today's brand. At least I knew how to fight the external kind. Today's internal stigma, where a community shuns its own, is seemingly intractable and far more destructive.

It breaks my heart that the worst of HIV stigma comes from my own community: gay men. It wasn't always this way. It might surprise today's younger gay men to learn that there was very little HIV-related stigma between us during the early years of the crisis. If anything, I felt the opposite of stigma when I publicly disclosed my status in the late '80s. Gay men with HIV received communal love and support. Once the gospel of safe sex was firmly entrenched, even sexual shunning became rare. Maybe it was our numbers, with upwards of half of New York's and San Francisco's gay men being HIV-positive by 1985. Maybe it was because many of us couldn't hide it, as our HIV painfully manifested as AIDS. Maybe it was our communal fighting back, as we rose up against a government that was ignoring our suffering.

Regardless of the reasons, we felt like one community. We were all living with HIV, regardless of status. I realize this view is skewed. I lived in a city where the social norms were being heavily influenced by ACT UP and other community responses to the crisis. The beginnings of gay-on-gay HIV-related stigma could be easily found in other cities and towns back then. But now it seems to be the norm, regardless of location.

Now that you can take your pills and hide it, and now that we've had at least one generation of gay men who never witnessed AIDS, the sense that we're all living with HIV is long gone. A culture of safe sex, where you always presume the person you're sleeping with is positive, has been replaced with a culture of barebacking, where risk is magically reduced by deeply flawed attempts at serosorting. The flaws are hidden because HIV is now hidden, by inadequate testing, or the very crowded HIV closet in which many now choose to live.

The result is a vicious cycle where HIV-related stigma leads to more HIV while hiding its damage by instilling fear and shame in the newly infected. Their resulting silence makes HIV seem rare and avoidable, giving space for the next generation's stigma. AIDS activists have been trying to break this cycle for years now, to seemingly little effect. There have been countless ad campaigns, online and otherwise, but they fall on deaf ears. Avoiding HIV also seems to mean avoiding a discussion about HIV, turning the page, not bothering to click on a graphic or link that even hints at that plague fought long ago. The stigma protects itself.

Can anything be done to change this sad status quo? Given our now-entrenched state of AIDS fatigue, I'm beginning to think the war on HIV-related stigma is lost. By all means, let's keep fighting it, if only to keep it from getting worse. But here's the important thing: We can still win the war against HIV. Recent history offers ample evidence that persistent public health interventions can overcome remarkable levels of social resistance.

An international push to wipe out polio has yielded stunning results since 1988, when it was endemic in 125 countries. Now it's down to just three, with total elimination possible by 2018. Thanks to the leadership of the Carter Center, Guinea worm disease is set to become the second human disease in history, after smallpox, to be eradicated. The campaign against it was launched in 1986, and incidence of the disease has since dropped 99.9-percent. It will be the first disease eradicated without the use of a vaccine or medical treatment. If we can wipe out polio in India with its extreme poverty (no cases reported since 2011) or eliminate Guinea worm in war-torn Afghanistan (no cases since 2007), then we can wind down HIV incidence in the U.S.

All it takes are concerted public health interventions and the money to fund them. We have the tools to reduce HIV incidence ("treatment as prevention," or TasP; flattening the "treatment cascade"; pre-exposure prophylaxis, or PrEP; etc.); we just have to apply them. Some localities are already proving this. Washington, D.C., launched an all-hands-on-deck effort in 2006 and has shown very promising results. New HIV infections have dropped 46-percent since 2007. By all accounts, HIV-related stigma is still alive and well in our nation's capital, but they've worked around it.

We need to plow through the continued apathy, ignorance, and stigma. While the gay men who moralize and finger-wag will most definitely slow us down, AIDS activists and their public health allies will ultimately win this war. So if you're fighting the good fight and getting any stigmatizing pushback, then push ahead even harder. Give a good smack to that finger in your face, ignore the moralizing idiots online, and find strength from your allies in this fight. And know this: When this crisis is finally over, there will be two kinds of people remembered: those who fought to end it, and those who slowed us down.

Huge Victory For People Living With HIV In NYC

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After years of battle, AIDS activists can claim a huge victory today for people living with HIV/AIDS in New York City. Mayor Bill de Blasio announced in his budget speech yesterday that he had struck a deal with NY Governor Cuomo to finally implement a 30% rent cap for the city's HIV/AIDS clients of supported housing:

"Working with the governor, I'm proud to say we're taking a big step forward to cap the rent contribution for HIV and AIDS clients of supported housing, folks with HIV and AIDS, who are struggling as it is and need some stability in their lives. I've believed in this 30 percent rent cap for a long time. The city will pay approximately two-thirds of this cost, something Mayor Bloomberg was unwilling to do, but I think is necessary. And Governor Cuomo and I have discussed this matter, and we're working on a final agreement for the state to join us in this effort."

From VOCAL New York's Jeremy Saunders: "We still have to make sure no road blocks arise, but today looks like the end of an 8-year fight for 10,000 people living with AIDS fighting for their homes, and their survival."

A big congrats to all the activists that have worked on this recently, and over the many years. In addition, this is a great sign that De Blasio is going to be a strong advocate for the AIDS community.

Paying People To End AIDS

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Thumbnail image for cash.jpgCould P4P4P be the future for effective HIV prevention? I'm very supportive of trying this if it works. From Dr. John G. Bartlett (Johns Hopkins School of Medicine), 10 Changes in HIV Care That Are Revolutionizing the Field, Medscape, Dec. 02, 2013:

P4P4P to Address the Gardner HIV Cascade Challenge

The Gardner cascade is well known to the HIV care community, but it represents a humbling pox on our HIV care system because it shows the very disappointing reality of HIV outcome. Despite the availability of powerful drugs for virtually all patients, only about 28% of the estimated 1.1 million Americans with HIV infection have achieved the goal of no detectable virus. The major issues accounting for this disappointing outcome are lapses in care at each step of the cascade -- testing, enrollment in care, retention in care, and adherence to ART. Many articles have been written about this cascade and have described possible methods to address each step, but none have clearly achieved a major advance.

The potential breakthrough in this stalemate is P4P4P, or "pay for performance for patients," which provides financial or other reward for patients to get tested, engage care, stay in care, and achieve viral suppression. It is now being studied in a controlled trial in Washington, DC, and Bronx, New York.

The reason for optimism is that P4P4P seems to have worked well in virtually all areas of chronic care that are dependent on patient adherence, including hypertension, diabetes, smoking, obesity, and measurement of INR. This approach to medical management of chronic disease is controversial, so it is not included in HIV guidelines or polite discussions, even though it is low-cost and virtually always works. Instead, we spend long hours and great resources to achieve this goal by other methods.

It is anticipated that the well-controlled National Institutes of Health-sponsored trial of P4P4P will impart validity and acceptability to this rarely discussed topic.

Is This My Beautiful Life?

A few days ago in New York City, a huge community forum was held titled "Is This My Beautiful Life? Perspectives From Survivors of the AIDS Generation." I was honored to work with the group that planned it, and to join the panel that kicked-off the discussion.

This all started for many of us on that Tuesday morning in December. Three days before, Spencer was making a seemingly strong recovery, and we thought he was out of the woods. Then everything went to shit, and we all rushed to that hospital none of us had ever heard of at the very tip of Manhattan. Spencer Cox was one of the youngest of ACT UP's alumni, and his death at only 44 sent a shock-wave to all of us—not just the current and former activists, but our generation—our AIDS generation, men and women, positive and negative. 

A huge and largely healthy discussion ensued - with long phone calls, dinners with friends we hadn't seen in recent years, Facebook threads, blog postings, and even a long article in a Sunday New York Times. A kind of bubble had burst. What did this say about us? How are we doing now? How are we treating each other? Is there a community that even cares about us?

Please watch this powerful eleven minute "trailer" of what many felt was a moving and cathartic night. The needs and concerns of the AIDS generation should not be ignored.

AIDS Kills 7,000 Gay Men In The U.S. Each Year


My comments this past weekend, after HOW TO SURVIVE A PLAGUE won a GLAAD Media Award for Best Documentary:

Thanks to Herndon Graddick and GLAAD for this award, and for saying that this history is important. Thanks to Anderson Cooper for bringing our stories to a larger audience, for remembering our heroes like Spencer Cox, and for having the kind of empathy and humility that was exemplified by Vito Russo. And thanks to Joy Tomchin, Howard Gertler, the team at IFC, and especially David France, for beautifully capturing, for all time, those tragic yet inspiring years too few of us survived.

As Larry Kramer said, the AIDS activism that led to the breakthrough treatments in 1996 stands as the proudest achievement the gay population of this world can every claim. But let's face it. A lot of us walked away from the fight after the drugs came out. Given the overwhelming fatigue we all felt after 15 years of unrelenting death, wanting to put this behind us was understandable.

But the AIDS crisis didn't end. We've let our guard down, and it shows. An estimated 30,000 gay men in this country became infected with HIV in 2010. Gay men are only about 2% of the U.S. population, but we're now the fastest growing group of new infections, accounting for 63% of total infections in recent years. Most of these are young gay men, and over half of these 13-24 year-olds are black gay men. Why aren't these numbers shocking us?

Nearly 7,000 gay men still die from AIDS in this country each year. I realize that gay marriage is important and worth fighting for, but shouldn't our national gay rights groups be doing more than token levels of activism around HIV/AIDS? This is by far the biggest health care issue in the gay community, but we are getting rolled as on AIDS policy these days, whether it's the newly reinstituted ban on funding needle exchange, or laws criminalizing people with HIV, or the minuscule amounts the CDC spends for prevention targeting gay men.

We have the power and the tools now to turn around these infection rates. We proved it once, we can do it again. We can end this silence, and finish the job. We can all act up a little for the health of future generations. Thanks for listening.
I did a radio interview with the CBC last week, Canada's public radio station, discussing the news about the "cured" baby with HIV. They also interviewed Timothy Brown, the so-called "Berlin Patient," and the first and only adult that's been cured. How will these "cures" affect those of us that have been living with HIV for months or years? When will we see a cure? My answers to these and other questions start at the 5:50 mark, but listen to Tim's interview first.

Grief Is a Sword: A Eulogy for Spencer Cox


This eulogy, and call to action, was delivered at "Spencer Cox: A Celebration of Life," a memorial service held on Sunday, Jan. 20, 2012, at The Cutting Room in New York City.

I want to remember the activist. I first met Spencer when he started showing up at ACT UP meetings in the fall of '88. We were all so young. I was younger than most, but he was seven years my junior.

Spencer started by joining ACT UP's most intimidating committee. The Treatment & Data gang was a pack of know-it-all divas who expected new members to climb the learning curve fast, and burn their own paths. He did both in short order, and quickly earned the respect and friendship of these self-taught expert activists. It didn't hurt that he was one of the few who could out-smoke Mark Harrington, or that he provided a constant soundtrack of dark humor to our often depressing work.

But it's when our activism started to pivot that Spencer really began to shine. AIDS treatment activism began with fury, and blind hope, that if we just pushed hard enough, we could force the system to find the cure or near-cures that were surely out there. But they weren't, and a simple bureaucratic fix wasn't going to save us.

Spencer and the other science geeks led this pivot. We could no longer take short-cuts around the tenets of scientific discovery. We must instead devise new and creative methods to use those basic tenets for our ultimate goals. Spencer, in particular, became almost religious about this new science-driven activism.

He and the other geeks started the pivot by challenging the hard-fought and hard-won orthodoxy of gay men threatened by AIDS from our politically active enclaves in New York and San Francisco, from neighborhoods like Greenwich Village, Chelsea, and the Castro. We demanded and got our quick FDA approvals. We used our often gay and truly heroic HIV specialists, becoming experts together, custom tailoring novel regimens from approved and unapproved treatments alike. Over time, we got more AZT knockoffs approved, with less and less applicable info on how to use them to actually save lives.

That's when the science geeks made their courageous play. Spencer slammed the status quo. He testified before the FDA about the accelerated approval of the third AZT knockoff, d4T, saying:

"The approval of therapies based on inadequate, ambiguous, uninterpretable or incomplete data offers severe and potentially insurmountable difficulties in the future evaluation of new treatments. This is the deck with which the current therapeutic house of cards was built."

It was a wonder watching him wow the FDA, and in meetings with the biggest names in AIDS research, like Anthony Fauci. He earned the respect, and the love, of his fellow science geeks, and those of us lower down the learning curve. We were family, albeit one with lots of incest happening.

Spencer played a key role when TAG launched an audacious campaign challenging Hoffman-La Roche's blatant attempt to get their protease inhibitor approved without providing the necessary real-world data on how to use it. I remember having my doubts at the time. Should TAG really go out on a limb like this, infuriating most of the other AIDS groups that sought to defend our hard-won regulatory reforms?

Spencer patiently walked me through the arguments for challenging the self-help orthodoxy we ourselves had help build. He made his case not with science or statistics, but with ethics. This was about moving beyond a status quo that provided the illusion of serving only a privileged few. This was about serving the greater good. This was about health care for all, built on a democratization of data, not just drugs. We needed answers, not just access. We needed clinical trial data that could be used for standards of care in all resource settings, so that the guessing would end, and clear treatment guidelines would save the greatest number of lives.

He was right of course. And today we have highly detailed treatment guidelines, backed by interpretable data, and adjusted for resource settings around the world. Eight million people on standardized regimens. Eight million lives saved.

It's a stunning legacy, and so bittersweet. How could that young gay man, confronted with his own demise, respond with a level of genius that impacted millions of lives, but failed to save his own?

This death hit us hard. We have grappled to make sense of it. Why did he stop his meds? What role did his struggle with crystal meth play? Was this a failure of community? Are there lessons we can learn?

These aren't just nosy questions by idle bystanders. There are thousands of survivors of the plague years who in small ways and large feel damaged and vulnerable. All of us have felt the pain and helplessness of watching a friend struggle with meth.

The details of Spencer's own struggle with it, or even if there was a struggle this past year, remains shrouded in the wildly divergent opinions of those who knew him. I saw him after his return to New York, and he was the Spencer of old: campily dismissive of almost everything and everyone, cutting in his humor, and with grand plans for the future, including walking the red carpet at the Oscars. He shined at the premiere of HOW TO SURVIVE A PLAGUE; comforted Sarah Jessica Parker after a screening a few weeks later; and wowed a crowd of healthcare workers at St. Luke's Hospital during a post-screening panel we did together just a few weeks before he died.

What we do know for sure is that a great deal of his life came crashing down in 2008 because of his struggles with addiction, and he was still far from rebuilding that damage. The debate that has ensued since his death between frustrated community activists and harm reductionists is worth having. We need to find some common ground that is neither complacent, nor stigmatizing.

Given Spencer's activism, his treatment interruptions were confounding. There were at least three over the last decade, all resulting in dangerous hospitalizations. When asked why, he would evade, probably realizing that the answers would be too painful to explain.

His last burst of activism was explanation enough. He spoke out forcefully about the depression and PTSD that the surviving generation of gay men from the plague years often suffered from, regardless of HIV status. While many of us, through luck or circumstance, have landed on our feet, all of us in some way have unprocessed grief, or guilt, or an overwhelming sense of abandonment from a community that turned its back on us, and increasingly stigmatized us, all in an attempt to pretend that AIDS wasn't its problem anymore.

That is Spencer's call to action, and we should take it on.

Maybe we've over-analyzed his death. The "why's" might be better explained by this young man's complexities, his genius and wit, and the flip side of that coin, his very human imperfections. The larger issues his death raised for our community should be explored, but not manipulated, from what was, in the end, a man's uniquely beautiful, courageous, and fallible life.

It is his activism I will remember.

In Paul Monette's Last Watch of the Night: Essays too Personal and Otherwise, he writes of his lover's death from AIDS and his own imminent one in the essay "3275," which is the plot number of Monette's gravesite with his lover's on Revelation Hill at Forest Lawn Cemetery:

"We queers on Revelation Hill, tucking our skirts about us so as to not touch our Mormon neighbors, died of the greed of power, because we were expendable. If you mean to visit any of us, it had better be to make you strong to fight that power. Take your languor and easy tears somewhere else. Above all, don't pretty us up. Tell yourself: None of this ever had to happen. And then go make it stop, with whatever breath you have left. Grief is a sword, or it is nothing."

Spencer Cox Playbill


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