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From Baptist Minister To AIDS Activist, From Renegade To Leader

Charles King

Fair warning -- for those of you who hate hero worship, you best skip this post. Over the last couple of months, I've developed a major activist crush on someone who's definitely not new to the fight against AIDS. Frankly, I've been humbled by the experience, being able to witness up close the remarkable skill and grace of a man who I now consider our country's greatest AIDS activist.Charles King is the President and CEO of Housing Works, and along with Mark Harrington (TAG's Executive Director), the impetus behind New York Governor Andrew Cuomo's push to end epidemic levels of HIV/AIDS by 2020.

I've known Charles since the early ACT UP years. He joined about a year after I did, and had a unique background, having graduated from Yale Divinity School. His father was a fundamentalist evangelical minister, and Charles became a Baptist minister in his twenties. My first memories of him were when we both joined the small, risk-averse ACT UP contingent that went to New Orleans to protest during the 1988 Republican Convention, with Reagan, Bush and Quayle.

He joined our Housing Committee after that, which led to his co-founding of Housing Works. The birth of what's now one of New York's most impactful AIDS service organizations was thankfully the only time I've ever butted heads with Charles, and I'm forever thankful I lost that skirmish. He came to the floor of ACT UP asking for seed-money for Housing Works. I was head of the fundraising committee at that point, and was worried about the precedent. ACT UP rarely had much in the bank, and we had never given a grant to another group. I thought we needed every dollar we had, so I foolishly opposed the proposal. I lost (in a lopsided vote, as I recall). Charles, and AIDS activism, won.

By the late 1990's, Charles was in full renegade mode. Housing Works was at war with Mayor Giuliani, especially after his administration cut-off $6.5 million in city grants to the organization (see "Charles King's Holy War" from New York Magazine, 8/17/98). AIDS activists loved him for his epic fights with Giuliani, but the dirty little secret was that few of them leaped to his defense. He had earned a reputation of "not working well with others," to put it kindly. I would often hear from fellow activists "Charles is crazy!" Crazy or not, he usually won his battles with Giuliani, and Housing Works has now become a model agency combining service and advocacy that few other AIDS groups rival.

That combination of service and advocacy has also given Charles a knowledge base that few other activists rival. He knows the system inside and out, including how to change it when fixes are needed.

I never personally witnessed his crazy phase, if it existed, but the minister is back, with the wisdom only hardened fighters learn. There is love in his activism, and an understanding that we are all flawed but have voices and experience worthy of notice. Show me an "activist" that only sees their colleagues and adversaries in camps of good and evil, and I'll show you an ineffective advocate for change.

Charles gets this, and his effectiveness has been snowballing. I watched him co-chair the governor's AIDS task force, with its 64 highly-opinionated members, insanely tight schedule, and hundreds of community recommendations. His leadership was calm, focused, and brilliant. We got the job done. Watch his closing remarks below at the task force's last meeting. After the requisite political thank-you's, he reminded all of us why we're in this fight, and of the ghosts that push us onward. And then he remembers a former adversary, the governor's father, Mario Cuomo, who died on January 1st. He finds his goodness, and even a respect for the man's legacy in this fight. Cynics will sneer, but they won't be the ones that end this epidemic.

After you watch the video, take some time to read the ACT UP Oral History Project interview where Charles talks at length about his life and activism. If you don't get choked up by the moment that sparked his coming out, then you don't have a pulse.

Ebola vs. AIDS, Obama vs. Reagan

Obama vs Reagan

Compare and contrast: Ebola vs. AIDS, Obama vs. Reagan. Anyone who continues to defend President Reagan's response to AIDS is ignoring a history of gross negligence compared with the response to other disease outbreaks in the U.S.

Here's the first time President Obama's press secretary was asked about Ebola, on July 30, 2014. Ebola had yet to reach U.S. shores, but two Christian aid workers from America had become infected in Liberia.

Q: Is the President being briefed on the Ebola outbreak in Africa? And will it be addressed at the Africa summit and/or alter the Africa summit in any way?

MR. SCHULTZ: Yes, we continue -- well, no, it will not alter the summit, but we do continue to monitor the outbreak of the Ebola virus in Guinea, in Liberia, Sierra Leone and Nigeria closely. The President is indeed receiving regular updates, including speaking with his Homeland Security and Counterterrorism Advisor Lisa Monaco as early as yesterday before departing Washington.

The U.S. government, including the Departments of State, Health and Human Services, Centers for Disease Control, USAID and the Department of Defense, continue to provide a range of support and assistance to those countries and multinational organizations responding to the outbreak.

This includes the provision of personal protective equipment and other essential supplies, public health messaging and technical expertise. We've actually been engaged in this outbreak since March.

The press waited until Oct. 15 , 1982 -- 17 months after the first reported AIDS cases -- to ask President Reagan's press secretary about the "gay plague." By that time, there had been 593 reported cases in the U.S., and 243 deaths.

Q: Larry, does the President have any reaction to the announcement -- the Centers for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases?


Q: Over a third of them have died. It's known as "gay plague." (Laughter.) No, it is. I mean it's a pretty serious thing that one in every three people that get this have died. And I wondered if the President is aware of it?

MR. SPEAKES: I don't have it. Do you? (Laughter.)

Q: No, I don't.

MR. SPEAKES: You didn't answer my question.

Q: Well, I just wondered, does the President --

MR. SPEAKES: How do you know? (Laughter.)

Q: In other words, the White House looks on this as a great joke?

MR. SPEAKES: No, I don't know anything about it, Lester.

Q: Does the President, does anybody in the White House know about this epidemic, Larry?

MR. SPEAKES: I don't think so. I don't think there's been any --

Q: Nobody knows?

MR. SPEAKES: There has been no personal experience here, Lester.

Q: No, I mean, I thought you were keeping --

MR. SPEAKES: I checked thoroughly with Dr. Ruge this morning and he's had no -- (laughter) -- no patients suffering from AIDS or whatever it is.

Q: The President doesn't have gay plague, is that what you're saying or what?

MR. SPEAKES: No, I didn't say that.

Q: Didn't say that?

MR. SPEAKES: I thought I heard you on the State Department over there. Why didn't you stay there? (Laughter.)

Q: Because I love you, Larry, that's why. (Laughter.)

MR. SPEAKES: Oh, I see. Just don't put it in those terms, Lester. (Laughter.)

Q: Oh, I retract that.

MR. SPEAKES: I hope so.

Q: It's too late.


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.


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