Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:

The AIDS Healthcare Foundation scandal has taken a downright creepy turn.

Only one day after a stunning whistleblower lawsuit against AIDS Healthcare Foundation (AHF) was made public, the embattled organization withdrew funding from an upcoming HIV advocacy event because one of the plaintiffs is involved in its planning, according to records obtained by My Fabulous Disease. The apparent strong-arm tactic has reached beyond whistleblower Jack Carrel and has had a "real impact" on the State-wide advocacy event, according to organizers.

weinstein imageThe AHF monies were meant to provide transportation for dozens of Louisiana residents living with HIV to travel to Baton Rouge to meet with their State legislators. Jack Carrel, one of the plaintiffs named in the lawsuit against AHF, is helping to organize the event.

In a voice mail to Carrel, a local AHF staffer states that Carrel's involvement in the whistleblower case was the reason for AHF's withdrawal. Carrel is participating in the suit alongside former AHF managers Mauricio Ferrer of Florida and Shawn Loftis of New York.

The lead counsel for the whistleblowers believes this is a retaliatory action on the part of AHF head Michael Weinstein that unfairly punishes his client and those around him. "This reaction by Mr. Weinstein is at its core indicative of what this lawsuit is about," said attorney Theodore Leopold of Cohen Milstein. "Although on the surface they claim that people with HIV are their primary concern, when you lift the veil it is all about profitability. They end up taking this (lawsuit) out on those who are most in need of services."

According to Leopold, there is no legal reason for AHF to stop participating in the event simply because Jack Carrrel is one of the people helping to organize it. "There is nothing to prevent them from communicating with Jack," said Leopold, as long as they do not discuss the pending suit. No other solution to Jack Carrel being involved in the advocacy effort were offered or discussed with organizers, according to email documents and a voice mail.

The whistleblower suit claims Carrel was fired from his position as AHF's Director of Public Health in the Southern Bureau after raising questions of financial impropriety. The suit claims fraud, conspiracy, and that AHF unlawfully acquired patients for its clinics. Having worked in the field for thirty years, Carrel has since continued advocating as a person living with HIV and was hired last year as an HIV health educator for a Baton Rouge non-profit organization.

In an exclusive interview, Carrel explained that he had been working quite comfortably with the local AHF staffer to arrange for buses to bring people living with HIV to Baton Rouge for a day of advocacy training and visits to elected officials. The event is organized by theLouisiana AIDS Advocacy Network (LAAN), for which Carrel volunteers as Chair of the Mobilization Committee.

"I met in person with the AHF staff person on Friday (March 3) and we planned it all out," Carrel said. "She was working on identifying the bus company and making the plans for it. We were good to go."

The AHF employee coordinated the effort with Carrel and others right up until Wednesday, April 8, the day the whistleblower suit was made public. On Thursday, April 9, Carrel received the following email from the AHF staffer:

Hi Jack,
Sorry, unfortunately at this time we, AIDS Healthcare Foundation, cannot participate in the lobby day scheduled for May 19, 2015, nor can we provide monetary resources for transportation, for May 18, 2015 and May 19, 2015. Thanks and sorry for any inconveniences.

Hours later, the same AHF employee left Carrel a voice mail and explicitly stated the reason AHF was pulling their support. The voice message transcript:

"Hi Jack how ya doing, this is (the AHF staffer), I've been trying to reach you since yesterday, but unfortunately, uh, we are unable to fund the buses due to your name being on a lawsuit against AHF and it breaks my heart but, um, sorry but we cannot uh, continue to, to do that. Alright. Talk to you later, thanks, bye."

Carrel said the AHF staffer "is a great person. She's been active here for a number of years," and believes she was caught in a terrible situation created by AHF management. "There are many dedicated people working at AHF," said Carrel.

LAAN logoThe withdrawal of organizational and financial support has left organizers with LAAN holding the bag less than five weeks before the event date of May 19.

"This has had an impact," said Dorian-gray Alexander, the Chair of LAAN, "because we had been planning on AHF support to increase the number of participants lobbying their legislature this year. We're working to find a Plan B." Others involved in State advocacy declined to be interviewed, citing the risk of further impact on people living with HIV in the State.

It is not clear why AHF, if they had concerns about working with Carrel, did not work with other organizers instead, rather than engaging in a seemingly punitive action that affected the entire event and the people hoping to attend. It is also unclear if AHF will now withdraw all funds or cease collaborating with any person or agency associated with Jack Carell, something their actions suggest is entirely possible. Considering how close-knit the Louisiana HIV advocacy movement is, such a blanket blacklist could have a troubling effect.

On its web site, AHF includes legislative advocacy as one of its primary activities. That is, when they are not undermining the State-wide advocacy efforts organized in part by people they don't like. Allegedly.

AHF could not be reached for comment.

Mark

Michael Weinstein, the polarizing and famously litigious head of AIDS Healthcare Foundation (AHF) just got a taste of his own medicine when a stunning Whistleblower lawsuit against AHF filed last year was unsealed and made public.

Michael WeinsteinThe 34-page suit, brought by three former staffers who claim they were fired when they raised questions of financial impropriety, charges the agency with ten counts of defrauding the government, conspiracy, and a "multi-State kickback scheme" to maintain service quotas and keep the government-funded gravy train rolling.

In exclusive interviews with My Fabulous Disease, one of the plaintiffs, Jack Carrel of Louisiana, his lead counsel Theodore Leopold, and several prominent figures in the HIV arena spoke out about the details of the charges and what the lawsuit could mean for the beleaguered head of the country's largest provider of HIV clinical services.

A "CRIMINAL EFFORT"

The plaintiffs accuse AHF of an "organizational-wide criminal effort" across at least 12 States in the form of kick-backs to AHF clients and staffers. They believe that AHF has defrauded governmental programs out of tens of millions of dollars, based on their own experience with the agency going back to at least 2010.

The three plaintiffs, all former managers at AHF who were in a position to be familiar with agency policy, also include Mauricio Ferrer of Florida and Shawn Loftis of New York.

When someone tested positive in an AHF clinic, the suit claims, they were offered cash or other inducements to be linked to care in AHF clinics. Furthermore, AHF staff were provided commissions when they successfully linked someone with a positive test result to AHF services. This procedure was developed first in Los Angeles and then spread across all States where AHF has a presence.

The policy wasn't exactly clandestine. In fact, it was written right into the "AHF Linkage to Care Training Manual" included as an exhibit in the lawsuit (partial snapshot below).

AHF Doc 2b

This kind of incentive is flagrantly illegal. Defying the Federal Anti-Kickback Statute is a felony offense. Grant monies received from the government, such as through the Ryan White CARE Act, CDC, or other HHS programs like Medicare, strictly forbid kickbacks.

The Anti-Kickback Statute ensures "there are no behind-the-scenes shenanigans for profit reasons," said lead counsel Theodore Leopold of Cohen Milstein, the firm representing the plaintiffs in the case. "The Federal law is quite clear. We want to be sure the clients are getting proper care and treatment." Medical decisions should be for the betterment of the patient, Leopold said, "and not to put money into AHF's pockets."

"This case is about AHF gaming the system," Leopold said. He explained that kickbacks "can lead to an over-utilization of services, corrupt the process, and exploit the population most in need of services." The suit claims that although AHF was formed as a not-for-profit agency, it "exhibited a for-profit corporate mindset and a voracious appetite for any and all revenues associated with HIV patient referrals.

"We are seeking monetary recovery on behalf of the government for funds," Leopold said, which the suit contends were billed through improper means.

ONE PLAINTIFF SPEAKS OUT

Jack Carrel holds a Master's Degree in Public Health and is working on his doctorate. He came to AHF in 2012 after working in the HIV field for nearly 30 years. He is also HIV positive and feels a strong connection to those testing positive and seeking services.

Jack Carrel 2As Director of Public Health for AHF's Southern Bureau, Carrel questioned the financial incentive policy that directed people who tested positive into AHF clinics, but was "assured it was perfectly fine," Carrel said. "And then when we had meetings with funders, other (AHF staffers) in the meeting would tell funders that we would invite clients to use any other clinic they wanted, and I knew that wasn't true." Carrel was fired after objecting to the "linkage to care" policy.

"I tried to do something about it and I wasn't able to," Carrel said. "I'm HIV positive and I work in this field. I want people to be in care and to achieve viral suppression. But this system didn't give clients the choice for getting services where they wanted."

People who have just received HIV positive test results are often in shock, emotionally vulnerable, and susceptible to nearly any suggestion. AHF staffers were financially rewarded for influencing their clients' healthcare decision-making, according to the lawsuit. They allegedly plied clients with money, free fast-food lunches, and rides directly to AHF clinics.

Attorney Leopold is careful to point out that this is a civil matter and not a criminal one. A tepid statement released by AHF in response to the suit contends they did "nothing wrong" and use as proof of their innocence the fact that the government has declined to intervene in the legal action.

The mere fact the government has not, as of yet, chosen to intervene "is no reflection on the validity of the case," contends Leopold, citing that this often happens when there is already outside counsel involved. In other words, the government may be more than happy to allow this lawsuit to do the legwork for them and then use it to build a case for later criminal charges.

"WE WILL SUE YOU!"

The lawsuit places much of the responsibility for the AHF scandal squarely at the feet of Michael Weinstein who, at a 2013 AHF Leadership Summit, personally advocated for increased "positivity rates," more linkage directly to AHF services, and "the payment of financial incentives to patients for the purpose on inducing self-referrals to AHF medical care," according to the suit.

The irony of the Whistleblower action is the rich history AHF has of threatening others with litigation. Under the direction of Weinstein, AHF participated in their own, profitable Whistleblower lawsuit against Bristol-Myers Squibb in 2010 and Weinstein has always used potential litigation toward others as a playing card.

(Weinstein has also engaged in expensive petitions to mandate condom use in porn, called the pre-exposure prophylaxis [PrEP] medication Truvada "a party drug," and taken out full page ads that significantly misrepresent PrEP efficacy findings, all to the consternation of his peers.)

The animosity Weinstein has engendered among other HIV advocates can be traced back for decades. Sue Crumpton served as the director of LA Shanti, the first HIV support agency founded in Los Angeles, from 1992-1998. She remembers L.A. County planning council meetings "filled with drama, courtesy of Mr. Weinstein."

"Michael never showed up to Planning Council meetings unless there was grant money on the table," Crumpton said. "And then if things didn't go his way, his first response was to say 'we will sue you!' The other agencies didn't have the resources to respond to a lawsuit, so he would get his way."

PrEP activist and former AHF poster boy Eric Paul Leue, who broke ties with the agencyafter Weinstein's widely maligned objections to PrEP, has little patience with such tactics. "AHF has sued counties, cities, and departments of health, and has bullied smaller organizations into submission with litigation that real non-profits cannot afford to fight," he said.

Leue relates the story of AHF attorney Samantha Azulay who, during a case in which AHF fought to have funding taken away from a small organization serving Los Angeles youth, stated that "maybe you've got to cut up a couple trees to save the forest."

"That's what it comes down to," said Leue, who began a #RemoveWeinstein petition last year. "AHF leadership is the forest and they do not care about the community. They care about their bottom line of one billion dollars per year."

Weinstein's litigious nature and the sheer size of his agency intimidated plaintiff Jack Carrel and gave him pause when considering what to do about the policies he knew to be wrong. "AHF is a very big organization," Carrel said. "And I'm one HIV educator. So that was, and still is, scary."

"A THUG AND A CROOK"

Weinstein's battles with HIV advocates and agencies have largely marginalized him from HIV advocacy circles, where he is derisively known as the Tea Party of the HIV movement.

Lifelong HIV activist Peter Staley (How to Survive a Plague) believes the legal fallout from Weinstein's actions is long overdue. "For those of us who have been fighting Michael Weinstein from day one," he said, "when he started ignoring the great legacy of science-driven AIDS treatment activism, this lawsuit couldn't have come soon enough. And yes," he adds, "it feels like payback."

Long term AIDS survivor Michael Petrelis, whose own blog The Petrelis Files is best known for holding HIV service agencies accountable by publishing their IRS 990 forms, has long criticized AHF for failing to post its 990 on their agency website.

"It's possible the charges in the lawsuit are just the tip of the iceberg," Petrelis said. "Since AHF is a behemoth with national and global offices - not to mention lobbyists in Washington - and negotiates directly with drug manufacturers among its various endeavors, there should be an AHF Watch Network... keeping a close eye on the organization, its Board and executives."

Peter Staley is already writing Weinstein's professional obituary while remaining concerned for the well-being of thousands of AHF clients. "We knew Weinstein was a thug and a crook," he said, "but his downfall will be bittersweet, because it could also bring down the empire he built, which includes lots of HIV/AIDS specialists and thousands of low-income patients."

"If I were on the AHF Board," Staley adds, "I would quickly clean house. All of this can be set right once Weinstein is gone, and AHF can live on under new management."

Plaintiff Jack Carrel thinks that, were something catastrophic to happen to AHF, "other agencies would step up" to fill the needs in service. And when asked if Weinstein deserves to keep his job, Carrel will only say that "when you're CEO of an organization, you are responsible for what it does."

Removing Weinstein may actually become an imperative for the AHF Board, Sue Crumpton believes.

"Michael always cultivated his own Board, which acquiesce to his whims, and he has always served as its Chair," she said, "but those other Board members also have a fiduciary responsibility to the agency. They could be held personally liable for this lawsuit. A Board can be ensured against many things, but negligence is not one of them. If they don't seek to remedy this situation, in my opinion, they are negligent."

For his part, lead counsel Theodore Leopold isn't particularly shocked by the alleged unlawfulness of AHF policy. "I've been doing this a long time," he said, "so not too many things, as it relates to corporate greed, surprise me."

Mark

(Photo credit of Michael Weinstein: Mitchell Zachs/AP)

The Night Miss America Met the Biggest Star in the World

| 1 Comment

It wasn't easy keeping my composure when I interviewed for my first job for an AIDS agency in 1987. Sitting across from me was Daniel P. Warner, the founder of the first AIDS organization in Los Angeles, LA Shanti. Daniel was achingly beautiful. He had brown eyes as big as serving platters and muscles that fought the confines of the safe sex t-shirt he was wearing.

Daniel Warner hotAt 26 years old, with my red hair and freckles that had not yet faded, I wasn't used to having conversations with the kind of gorgeous man you might spy across a gay bar and wonder plaintively what it might be like to have him as a friend. But Daniel, one of legions of people who had abandoned whatever career they had planned and went to work building support programs for the sick and dying, did his best to put me at ease. He hired me as his assistant on the spot, and then spent the next few years teaching me the true meaning of community service.

My new mentor and friend quite literally embodied Shanti's mission to provide a non-judgmental, compassionate presence to our clients, many of whom were in the final stages of life.

Daniel was also our secret weapon when it came to fund raising. Whether shirtless in a dunking booth, dressed in full leather regalia, or spruced up to meet a major donor, it was tough to resist his charms. He knew his gifts, organizationally and otherwise, and offered them liberally for the benefit of our fledgling agency.

As time went on, Shanti grew enormously but Daniel's health faltered. He eventually made the decision to move to San Francisco to retire, but we all knew what that really meant. I was resigned to never see him again.

LilyTomlin Lipsynca Credit Ron GalellaIn 1993, Shanti hosted our biggest, most star-studded fundraiser we had ever produced. It was a tribute to the recently departed entertainer Peter Allen, lost to AIDS, and the magnitude of celebrities who came to perform or pay their respects was like nothing I have ever seen. By that time I had become our director of public relations, and it was my job to corral the stars into the media room for interviews.

Celebrities like Lily Tomlin, Barry Manilow, Lypsinka, Ann-Margret, and AIDS icon Michael Callen were making their way through the gauntlet of cameras in the crowded media room. I had tried to no avail to convince our headliner Bette Midler to make herself available to the expectant press, but as I stood in her dressing room pleading my case, she firmly declined, explaining that she had an early morning call for the filming of the television remake of Gypsy. I had tried to insist until she waved me away and started removing her panty hose right in front of me. I nearly tripped through the doorway during my frantic retreat.

Back up in the media room, one of my volunteers approached me with a look of shock and excitement on his face. He pulled me from the doorway. "I didn't know he was going to be here," he said with wide eyes. "I mean -"

"Who?" I asked. On my God. Tom Hanks? Richard Gere?

"He's with Miss America, Mark," he said. "They're right behind me." We both turned as the couple rounded the corner of the hallway. They entered the light of the media room and I barely kept a gasp from escaping.

Beautiful Leanza Cornett, who had been crowned Miss America, in part, by being the first winner to have HIV prevention as her platform, had a very small man at her side. His head bore the inflated effects of chemotherapy, which had apparently done little to stem the lesions that were horribly visible across his face, his neck, his hands. His eyes were swollen nearly shut. In defiance of all this, his lips were parted in a pearly, shining smile that matched the one worn by his gorgeous escort.

I stepped into the media room, wanting to collect myself, to wipe the look of pity off my face. I swallowed hard and stepped into the doorway to announce them to the press.

Daniel Warner Leanza Cornett 93 Karen Ocamb"Ladies and gentlemen," I said. "Miss America 1993 Leanza Cornett, escorted by Mr. Daniel Warner, co-founder of the Los Angeles Shanti Foundation."

The couple walked into the bright light and several flashes went off at once. And then the condition of Miss America's companion dawned on the camera crews. A few flashes continued, slowly, like a strobe light, and across the room a few of the photographers lifted their eyes from their equipment to be sure their lenses had not deceived them.

Daniel looked to me with a graceful smile, and it became a full, sunny grin as he looked to the beauty queen beside him and put his arm around her. She pulled him closer to her. Their faces sparkled and beamed - glorious, joyful, defiant - in the blazing light of the room.

That man, I thought to myself, that brave, incredible man is the biggest star I have ever seen.

And then the pace of the flashes began to grow as the photographers realized they were witnessing something profound. The couple walked the path through the room and toward the other door. "Just one more, Mr. Warner?" one suddenly called out. "Miss America! Just another?" The room became a cacophony of fluttering lenses and calls to look this way and that, all of it powered by two incandescent smiles.

Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious moment of joy and empowerment.

"Boss!" I said to him as they exited the room. "I didn't know you would be here. It's just... so great."

He winked at me. "I'll be around," he said. "I brought my whole family with me tonight. I need to get to the party and show off my new girlfriend!" The three of us laughed, and then I watched Daniel and Miss America, arm in arm, disappear down the hall and into the reception.

Only months later, I was at my desk in Atlanta in my new position as director of a coalition of people living with HIV when I received a phone call.

"Mark, this is Daniel," said a weakened voice. "Monday is my birthday, and I thought that might be a good day to leave." Daniel had always been fiercely supportive of the right of the terminally ill to die with dignity and on their own terms. We shared some of our favorite memories of our days at Shanti and I was able to thank him for his faith in me and setting into motion a lifetime of work devoted to those of us living with HIV.

Daniel P. Warner, as promised, died on his birthday on Monday, June 14, 1993. He was 38 years old.

Mark

(This story is adapted from my book, A Place Like This. Photo credits: Daniel Warner by Jim Blevins; Lily Tomlin and Lypsinka by Ron Galella; and Leanza Cornett and Daniel Warner byKaren Ocamb.)

The annual HIV Cruise Retreat, commonly referred to as "The Poz Cruise" (no association with POZ Magazine) will set sail this November 8-15 aboard the Ruby Princess, departing Los Angeles and cruising the Mexican Riviera cities of Mazatlan, Puerto Vallarta and Cabo San Lucas.

This year, though, there will be a somewhat ironic special guest on board: Timothy Ray Brown, the first man to be cured of HIV.

Timothy Crop 2"Timothy and his partner will be joining us, and we're thrilled," says cruise director Paul Stalbaum, a longtime HIV survivor and travel agent who began organizing the cruise over a decade ago. "He will participate in a presentation and Q&A on cure research and share his story with us. His personal grace and his public education efforts since becoming 'the Berlin Patient' are deeply admired. I know our passengers can't wait to meet him and have some fun on the Mexican Riviera."

Brown, co-founder of the Cure for AIDS Coalition and Cure Report, maintains that his identity hasn't really changed since his cure in 2007, the result of a stem cell transplant for the leukemia he was battling at the time. (The transplant donor had the CCR5 gene mutation that blocks HIV from entering human cells.)

While the procedure hasn't been successfully duplicated in other HIV patients precisely, it has led to advances in gene therapy treatments that incorporate what was learned from Brown's case.

"Remember, I was HIV positive twice as long as I have been cured," Brown says about joining the Poz Cruise. "I still consider myself part of the HIV community. I wouldn't have it any other way."

"There's something special that happens when so many people living with HIV are together," says Stalbaum of the hundreds of cruise articipants. "All the social walls that divide us just fall away. Our happy group of poz cruisers, who are often joined by their negative partners and family members, aren't concerned with HIV status or age or appearance. It creates an environment where true friendships--and, yes, even some romance--are free to bloom. Our group watches their friend list on social media explode after every cruise."

OLYMPUS DIGITAL CAMERAThe HIV Cruise Retreat brings together people living with HIV, their loved ones and allies for a week of exclusive theme parties, private excursions and educational events. While not a fully chartered ship like RSVP or Atlantis, the parties, events and even dinner arrangements for participants are exclusive.

Otherwise, says Stalbaum, "we mix with other people, just like in real life. And we're holding hands and feeling proud. We usually commandeer one of the pools on the first day, and it's quite a sight to watch the other passengers realize we are a colorful group indeed. A lot of the women on board ditch their husbands to hang out poolside with us instead. We're a lot more fun."

This will be the first time in seven years that the cruise has departed from the West Coast, and it's expected to be a sold-out cruise. Special group cabin rates are available until Feb. 28. More information, including video blogs from past cruises, is available at HIVCruise.com or through Paul Stalbaum at (954) 566-3377.

This article post originally appeared in Frontiers Magazine in Los Angeles. Timothy Ray Brown photo: Scott Taber. Cruise tubing photo: Brian Molenaar.

(My friends: Building community among those of us living with HIV is a passion of mine. I realize that although the cruise is reasonably priced it is also out of reach for some of my readers, and I hope you will understand my enthusiasm for supporting this event. This will be my 5th year to volunteer as MC of the cruise -- I pay for my expenses like everyone else -- and it has become a yearly vacation that I truly look forward to. I hope you will check it out! -- Mark)

Sean Strub and the Legacy of AIDS

| 1 Comment

Before my interview with activist Sean Strub, author of Body Counts: A Memoir of Politics, Sex, AIDS, and Survival, let me share a revealing story.

It was late 2011 and my life was in shambles. The breakup of a long term relationship had sent me into a spiral, followed closely by a devastating drug addiction relapse. I had weathered the fallout and taken refuge at my mother's home in Louisiana.

Sean StrubAnd then came a phone call from Sean Strub, founder of POZ Magazine and lifelong advocate for those of us living with HIV. We were acquainted but not yet close friends and the request he made during the call surprised me. Would I be willing, he wondered, to come visit him for a few weeks and help get his new HIV anti-criminalization effort, The Sero Project, off the ground?

Sean had read a blog posting I had written about my breakup and relapse, and must have known I wasn't exactly firing on all cylinders. I was a recovering addict with a trail of wreckage in my recent past, and yet he wanted me to come work with him. Like, in his home.

Within days I drove 1,400 miles to his Pennsylvania town. I managed to get some work done but mostly I piddled around his home office, getting my bearings again while we traded war stories and gossip from across our desks. Sean was passionate about every topic and a great teacher on contemporary HIV advocacy issues.

Before long, the real purpose of Sean's long distance invitation became clear to me. He didn't really need much help, but he knew that I did. He saw someone with potential who would benefit from a little mentorship, encouragement, and a friend. And God, he was right. Our time together strengthened and refocused me. Since then, I have heard many stories about Sean Strub taking people under his wing and helping to lift them up to a better place.

My admiration makes it nearly impossible to objectively review his remarkable memoir, Body Counts. I am an unapologetic fan and grateful friend. That being said, you must finish reading this article and go directly to Amazon and buy his book.

Body Counts is one of the most wide-ranging and well written remembrances to come out of the AIDS crisis. It seamlessly combines the social, political, and sexual landscape of Sean's journey. It moved me to tears more than once, and taught me a lot about what happened behind the scenes during the dawn of the century's greatest public health crisis.

All that, and there's a ton of great celebrity stories about people like John and Yoko (Sean was there the night Lennon was shot), Andy Warhol, and a host of colorful others.

Sean agreed to a conversation to discuss everything from his memoir to body image, sexual abuse, the legacy of AIDS, and the state of the HIV community today.

Here is that conversation:

Body counts coverBody Counts is such a marvelous achievement, Sean. So much history here, personal and otherwise, and witnessed from such close proximity. Thanks for not holding back the juicy stuff about politicians and celebrities!

For better or worse, politicians and celebrities are intertwined with the history of the epidemic, in ways both bad and good. My perspective at times is unusual-like when I was running the "Senators Only" elevator in the U.S. Capitol-and I tried to present the humanity, good and bad, of those I write about.

Also, in terms of the epidemic, it was a conscious decision and key strategy to exploit celebrities to gain attention and action in response to the epidemic. Elizabeth Taylor knew this better than anyone and she was amazing at getting others to join her in spending their celebrity capital on behalf of something important.

And you're our tour guide through those years. I think your criticism of President Bill Clinton's AIDS response might be surprising to people. Aren't we supposed to love him?

Others have suggested that Clinton's post-presidency focus on the global epidemic is an effort to atone for his failing in this regard during his presidency. When salon.com published an excerpt from Body Counts that was about the Clinton Administration, it generated a lot of nasty comments. It was the epidemic driving a generation of gay men out of the closet and into activism that ultimately was critical to electing Bill Clinton, yet as soon as he was elected it seems like the air was let out of our activist balloon.

In some ways I think we-as a queer community-are more effective as outsiders, where we had to learn to survive, than we are as insiders, where we haven't been as welcome or skilled. When Clinton was elected, many of our leaders became insiders and didn't take everyone with them.

I'm glad you're not letting people off the hook. Was it important for you to save our AIDS history from those who might revision it?

Initially the impetus for writing Body Counts came from the realization that, as time passed, there were fewer and fewer of us around from the early days who could tell what happened first-hand. It was also a way of validating my own life. I didn't grow up wanting to be an AIDS activist; I had other plans, but in the early 80's my life was hijacked by the epidemic. WritingBody Counts gave me some understanding of why I made the choices I made.

But the more I dug into the history I also saw how those years have been misrepresented or misunderstood, particularly the role of people with AIDS and HIV. Grassroots community efforts are often dismissed, minimized or ignored.

Historical truth is always more complex than the simplified-and sometimes manipulated-version of popular history we are led to believe. The epidemic's history has been, to an extent, commodified, rewritten to serve some agenda.

I think it is important to have as many first-person accounts, especially from people with HIV who were on the frontlines, so our experiences get documented and preserved. And as time passes, there will be more archives available, with documents from those years that will tell an even fuller picture.

As we get more perspective, the epidemic and our response to it, is understood in new ways and that's a good thing.

The ongoing theme to your AIDS work, in fact, has been a respect and focus on people living with the virus themselves. You carry that banner fiercely.

I don't think the LGBT community, or people with HIV, have gotten the credit we deserve for what we did in those early years. How we came together to love and care for each other was something remarkable. We should the world our very best face and what we did then should be celebrated and recognized as a model, worthy of emulation in many kinds of situations. I also know that it was other people with HIV who comforted me, educated me and enabled me to survive.

The book is a reclamation on your body -- from shame about it, from infection, from the sexual abuse you suffered. Do you think it's a common challenge for gay men to love their physical selves?

The title, Body Counts, is an intentional double entendre, referring to the loss of life from the epidemic, of course, but also my personal lifelong struggle for control of my body. It has had many enemies: the Catholic church which taught me that they owned my body, sexual abusers who exploited me, a government that sought to control my sexual expression, HIV itself and even the drugs to treat HIV. It has gotten better over time, but shame-shedding doesn't happen in an instant, it is incremental and I suspect, for me, will be a lifelong process.

I can't imagine revisiting some of the trauma you describe in the book, such as childhood sexual abuse and a rape by a roommate. Was it brutal to write?

I wouldn't call revisiting those memories brutal, but it was at times emotionally draining. Ultimately, it was healthy for me to process pain, hurt, guilt and shame that I had carried for years.

You write that it took 20 years to recognize the rape for what it was. Do we have a problem as gay men seeing ourselves as victims of abuse?

When it happened I didn't even think of the word rape as having any applicability to men. I was still so ashamed of my sexual desire and also conflicted about the degree of responsibility I bore for what happened. For many years I blocked out the sexual abuse and sexual violence I had experienced; it made me uncomfortable to think about because I didn't think there was anything constructive I could do with those memories except feel bad about them.

Now I can look back and see that while I may have been precocious in some ways, I was incredibly naive and vulnerable in other ways. In the process, I not only forgave those who hurt me but I ended up, quite unexpectedly, forgiving myself as well.

You were absolutely on death's door for a few years, and squeaked through in time for new medications to save you. And you were outright defiant about showing the Karposi's Sarcoma (KS) lesions that covered your body during that time.

I think if more of my identity and self-worth had been found in my body I might have been more likely to pursue cosmetic treatments for the KS. And the objectification of bodies is practically in the DNA of gay culture. Even as I began to accept my own body, it was within a context that clearly told me the body I had wasn't a gay ideal. I'm skinny, have no chest and am not especially athletic.

On the other hand, not conforming to that ideal, not being as invested in it, made it perhaps a bit easier when my body become so obviously ravaged by AIDS and, especially, Kaposi's Sarcoma. Less of my self-identity was in my body, so its decline didn't degrade my self-worth as much as it might have for others.

I didn't treat the visible KS lesions because I knew there were no treatments that would slow their growth and I already spent too much time in doctors offices. That was almost unimaginable to many people who were horrified that I had visible lesions and took no steps to even disguise them with makeup.

I make the mistake of assuming people know that AIDS advocacy changed the entire patient/physician dynamic, or that our response to what we endured will forever be remembered. Obviously that isn't necessarily so, and why books like yours are important.

There is an understanding that AIDS has been different, in many ways, and has had a profound impact on the culture, society, the healthcare system, drug development and approval processes, even geopolitics. I don't think it is widely understood how different the epidemic might have been had it not been for the self-empowerment movement, or how truly radical those early PWA pioneers were.

While ACT UP has been an important part of my life and advocacy, so too has the advocacy that precedes ACT UP, that set the stage for our movement. That earliest history hasn't been as well studied or understood and I tried to give some attention to those years in Body Counts. Randy Shilts' And the Band Played On provide an important and detailed view of the early years from his vantage point in San Francisco; the story from those years in New York hasn't been nearly as thoroughly explored. Also, And the Band Played On was written before ACT UP came on the scene.

When you first arrived at the offices of a coalition of people with AIDS, you write about having found a place you belonged, at last, even after having begun a business career and worked in politics. What about it struck you so deeply?

Total solidarity. I felt so welcome and safe that it enabled me to overcome the fear of stigma. That's what I've tried to do for others ever since.

What are the greatest threats to people living with HIV today, or at least to the kind of empowerment groups for us that have been so important to you?

Lack of respect for the principle of patient autonomy. This is happening across the board, as public health becomes militarized, disease securitized and treatments more complex and costly. The concept of the physician as a healer, providing individualized treatment, has too often given way to the physician as an extension of and agent of the state and the pharmaceutical industry, treating populations instead of individuals.

You are known to be skeptical of pharma and caution that medication side effects are too often ignored. Some people might find that ironic, given that new medications saved your life. Is that fair?

I think skepticism about pharma, when it was pharmaceutical treatments that saved my life, isn't ironic but common sense. Anti-retrovirals, like many medicines, are powerful treatments. Anything very powerful can be used in a negative or positive way; the more powerful the more important it is to be careful, cautious and skeptical.

Skepticism saved my life. Had I not been so skeptical, I would have taken more treatments that, in hindsight, we now know would have hurt me more than helped me. I am alive because I was lucky or smart or skeptical enough to refuse pharmaceutical treatments at one point, when they were strongly recommended to me by the medical establishment, as well as because they were available to me and I took them at another point, when I needed them.

The irony isn't found in me. The irony is that a healthcare system that purports to heal and a scientific establishment that purports to be interested in discovery has so often refused to listen to or learn from those living with the disease. Had our voices been valued more highly, the epidemic would never have gotten as big as it has.

I'm a little surprised that your book is the first memoir by a major imprint about those early years in New York City and the early ACT UP era. What do you make of the recent interest on film about AIDS in the 1980's, such as How to Survive a Plagueand Dallas Buyers Club?

Enough time has past since the worst years that those who survived can reflect with greater objectivity. Many survivors feel compelled to remember the dead and bear witness to what we experienced. That has become a sense of obligation, even a compulsion, for many of us, particularly as we age and realize there are fewer and fewer of us around to speak first-hand about those years.

For many it is a delayed grieving; when friends were dying so fast and in such great numbers it wasn't possible to fully grieve them. But we filed away that pain, to process later. Now it is later.

The explosion in cultural production in the last few years, the films you mention as well as books and exhibitions, is somewhat analogous to the cultural production following the Holocaust. Not so much in the 40's and 50's, but by the early 60's it had started to grow dramatically. Yet 15 or 20 years past the worst of those days, the memories and words and testimonials start to come forth.

But even Dallas Buyers Club and other works of art haven't done well with their bottom line. We might be taking a look back, but it isn't exactly a highly commercial enterprise, is it?

No, it isn't, to many people anything about AIDS is such a downer they aren't interested. Many gay men have created lives that have protected them, emotionally, from the pain of the epidemic and they don't want to be reminded of it.

But I'm not sure we would be in any better position in terms of addressing the epidemic if the books and films about its earlier years were enormously profitable. There is an historical record that, in time, will be vastly more important than how many copies or tickets are sold today.

Body Counts seemingly has everything, from Washington politics to brushes with celebrity to your own sex life, and the book had major endorsements. I will admit I thought it would be a bestseller, and rightfully so. Or at least it should have been.

I suspect every author wishes their book sold better and I'm no exception. But while I didn't make the NY Times bestseller list, Body Counts has gotten excellent reviews -- almost across the board -- and hundreds of people who read it have contacted me with appreciative comments, which is cool.

The publisher early on told me she expected the book to have a long sale and she has been proven correct. It is getting assigned in college coursework and continues to sell, even though it has been a year since the original publication date.

College kids are studying your book? That has to be gratifying, and it sounds like the perfect use for your account of this history.

Yeah, that's cool, isn't it? I spoke at a dozen colleges and universities last year and found student audiences to be engaged, stimulating and helpful for keeping my own thinking fresh.

Strub_Body Counts_TP FINALThe cover artwork and even the subtitle of the book were changed for the paperback. Why?

The hardcover has a picture of me kissing Michael Misove, my partner who died in 1988 and the subtitle was "A Memoir of Politics, Sex, AIDS and Survival." For the paperback, the photograph was changed to one of a young and cute me looking directly at the camera. The thought was that the picture of Michael and me, while very sweet, may imply the book is about that one relationship between these two men and if someone wasn't interested in that they may pass on the book. The picture of just me alone wouldn't be so narrow.

The subtitle for the paperback was changed to "A Memoir of Politics, Activism and Survival" in the belief that the word "AIDS" may turn off some buyers. That was weird, but I think probably true. My point was and remains to get as many people to read the book as possible, so I was supportive of any change that would help achieve that goal.

So what next for you? I know you've been doing a book tour and events.

I want to continue working to help people with HIV find greater agency and empowerment, particularly through support of and strengthening of networks of people with HIV. In time, I think the self-empowerment advocacy will start to blur the lines of specific distinctions between diseases and conditions; it will be about a broader movement to take back healthcare and choices about our health and bodies from the corporate grip that has been so damaging to the lives and health of many.

I'm increasingly aware of the march of time. Is it too soon to ask how you want to be remembered?

There's no question but that time becomes more precious as one ages and for those of us, like you and me, who have been lucky to survive when so many of our peers did not, it only makes that sense more intense.

It is peculiar to think about how one would like to be remembered because, first of all, no one wants to be remembered for spending much time thinking about how they would like to be remembered. What is important is what I am doing today and if I'm doing that well, it won't matter how I'm remembered.

I think I'm going to start this piece by telling people about your kindness to me after my breakup. Would that embarrass you?

I'm beyond embarrassment, I think. And I could not be more proud of our friendship.

My Gonorrhea Nostalgia

| 3 Comments

The first time I contracted gonorrhea, which in my day was affectionately called The Clap, I was 20 years old and had just moved to West Hollywood, California. It was 1981, disco was still thumping in the bars, and the bath houses were packed. My dance card was filled.

2 SU1HXzk4NjctMTEuanBnWhen I admitted my telltale symptoms to a friend, he directed me to the local clinic in the heart of the gay strip. The waiting area, filled to the brim with gay men, had the undeniable scent of Brut cologne and testosterone, and despite the circumstances we all cruised one another through sheepish glances.

It was embarrassing but not the worst day of my life. The clinician touched me in private places with rubber gloves and the shot he gave me worked. Life went on.

No one told me I should be using condoms, not in the clinic and not among friends. The very suggestion would have been ludicrous. Half the fun of being gay was the blithe disregard for rubbers. We knew the symptoms of trouble and dealt with it accordingly. An STI (sexually transmitted infection) was an annoying rite of passage and little more. We had not yet met a virus that could harm us in any significant way.

During my early years of recreational sex in the busy gay mecca, I caught The Clap so many times I called it The Applause.

Which brings me to a common objection to the use of pre-exposure prophylaxis (PrEP) for the prevention of HIV transmission. Skeptics of the strategy warn that taking a pill to prevent HIV does not guard against other STI's and therefore condoms must continue to be used.

When did avoiding every possible STI become the new goal for gay sexual behavior? Syphilis, chlamydia, and gonorrhea are all easily treated and cured. Scary campfire tales of a spreading superbug impervious to all treatment have failed to materialize. The very idea of getting The Clap again just makes me feel nostalgic.

No longer is avoiding HIV the prime objective; we must also now use a condom every time so that we are never exposed to, well, whatever. How many hoops must we jump through in order to fuck in a pleasurable way? We can't win for losing.

I'm beginning to wonder if the avoidance of pleasure has become the real objective; after a generation of fear and mortality, we don't see pleasure - and I mean sweaty nasty bodily fluid exploding pleasure - as a basic human need we can enjoy as gay men, much less deserve. Meanwhile, heterosexuals acquire STI's or get pregnant with the same regularity as always. Our gay sin is always greater.

Whatever moderate concern we once had for contracting an STI (and empathy for those getting one) has been transformed into a fearsome judgment of any repercussions of gay sex, regardless of its actual threat to our health. It's a shame-based, sex-negative ideology and it is painful to observe, particularly within my own community.

There are many ways to avoid HIV infection that can still give you an STI. That's true. And every person should engage in sober reflection and make their own assessment of what risks they are willing to take. I am a proponent of "shoot the alligator closest to the boat," meaning, prioritize the risk and act accordingly.

Gay men who take steps to avoid HIV practice a number of strategies: they choose PrEP, or limit themselves to oral sex with partners whom they don't know, or they only top, or they know their partner is undetectable, or they are themselves on successful treatment. All of these methods can prevent HIV transmission but can still expose someone to an STI.

I consider the man who employs these strategies, and maintains a relationship with his health care provider to monitor any infections, a success story. I have no interest in telling him to jump through a few more hoops if he wants to be truly, totally, super safe from all of life's ills. There is a cost to being human and of the pleasures we seek, whether it's sex or fast cars or that second piece of cake.

Unfortunately, because the topic is gay sexuality, it tends to make some of those alligators appear much larger than they really are.

Mark



Archives

 

Subscribe to Blog

Recent Comments

  • John C: There are plenty of good specialty pharmacies out there that read more
  • New York City: Many in our community are understandably cynical and jaded by read more
  • Simon: As I read this Mark, I couldn't stop my eyes read more
  • Patricia Clark: Lovely! I'm glad you all enjoyed this trip. Two years read more
  • Charles Czuba: I believe I have been in love with Sean Strub read more
  • Christopher: I agree, Mark. We all can only live until we read more
  • mike: Mark, sometimes I am glad I am old. Young people read more
  • MAT STRAZZ: There are still lots of infections one can get with read more
  • Shawn Decker: Great post, Mark. Thanks for introducing us to this wonderful read more
  • FemaleWhitePozAlone: It is wonderful that members of the homosexual community can read more

Find recent content on the main index or look in the archives to find all content.

Mark on the Web

Mark on Twitter

Disclaimer

The opinions expressed by the bloggers and by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong and/or its employees.

Smart + Strong is not responsible for the accuracy of any of the information contained in the blogs or within any comments posted to the blogs.



© 2015 Smart + Strong. All Rights Reserved. Terms of use and Your privacy