Posts Tagged ‘hiv’
Wednesday, April 15th, 2015
ACT UP has always intimidated me. In the 1980’s, while working at LA Shanti to provide emotional support to those dying of AIDS, I doubted my activist cred while watching the dramatic, inspiring actions of ACT UP. Everyone has a role to play, of course, but I so admired the courage and laser-focused anger of ACT UP, as evidenced in the Oscar-nominated documentary How to Survive a Plague.
So it was with excitement, yes, but also a great deal of trepidation that I accepted an invitation to speak at ACT UP NYC’s first town hall forum on AIDS long term survivors last November. I certainly qualified, having tested in 1985. But what could I possibly offer a room filled with activists who had literally defined the word empowerment and had stomped their way across New York City during the most ravaging days of AIDS and beyond?
The forum was held at the NYC LGBT Community Center, in the very room where Larry Kramer had founded ACT UP decades earlier. I bought an ACT UP button at a side table, with tears in my eyes. The sense of history was palpable.
Any doubts about the relevance of addressing long term survivors were answered by a packed room. The program included presentations by Graham Harriman, Director of the HIV/AIDS Bureau, Mark Brennan-Ing of the ACRIA Center on HIV & Aging, and popular local gay therapist Scott A. Kramer.
When it came my time to speak, to offer my personal perspective on a lifetime with HIV, I abandoned my note cards and the story came pouring out of me. My voice quivered the entire time. I cried and told my secrets and my shame and my grief in ways I have never revealed on my blog.
The room responded with warmth and acceptance. Afterwards, iconic ACT UP members whose names I recognized greeted me and thanked me (like Ed Barron, at left). It was one of the most nerve-wracking and proudest days of my life.
OUT FM featured my remarks recently on their weekly radio show on WBAI/NY, and it is through their courtesy that I am able to share this recording of my presentation. It includes a little adult language here and there (sorry, Mom!).
Our most effective tool as people living with HIV, and as long term survivors in particular, is simply telling our story. There is such power in the personal.
My deepest gratitude goes to ACT UP NYC for everything, both then and now. Thanks for listening, and please be well.
Monday, April 13th, 2015
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.
The 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 the Louisiana 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:
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.
“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.
UPDATE: The Louisiana AIDS Advocacy Network has now set up a GoFundMe page to raise the funds needed to provide transportation and support for their advocacy event. I’m sure they would appreciate every single dollar they can get.
Thursday, April 9th, 2015
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.
The 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).
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.
As 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 is not uncommon 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 agency after 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.”
(Photo credit of Michael Weinstein: Mitchell Zachs/AP)
Need something completely different? Discounted cabins for the 2015 HIV Cruise Retreat this November 8-15 are going fast. Join a few hundred brand new friends on a cruise along the Mexican Riviera! We have our own theme parties, outrageous game shows, and excursions at ports of call — plus a special guest, Timothy Ray Brown, the first man to be cured of HIV. We will be sailing roundtrip from San Pedro (just outside of Long Beach/ Los Angeles) to an exotic mix of beach towns on the Mexican Western Riviera. Each town has its very own local charm and flavor. For more info, check out HIVCruise.com or contact our cruise director Paul Stalbaum at 888-640-7447.
Friday, March 20th, 2015
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.
At 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.
In 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, Bruce Vilanch, 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.
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 instant 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.
Monday, February 23rd, 2015
The annual HIV Cruise Retreat, commonly referred to as “The Poz Cruise,” 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 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.”
The 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 was written by Mark S. King and originally appeared in Frontiers Magazine in Los Angeles. Timothy Ray Brown photo: Scott Taber. Cruise tubing photo: Brian Molenaar.
(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)
If you are gay, HIV+ and in recovery, have I got the perfect retreat for you. The POZitively Fabulous weekend retreat is now in its 3rd year and growing by leaps and bounds. Created by and for HIV+ gay men in recovery, it offers fellowship, workshops, speakers, and plenty of time to enjoy the gorgeous Cloudland Canyon State Park in Georgia. I’ve attended and it was terrific. Get all the details at SoberPlus.com.
Wednesday, January 28th, 2015
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.
And 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 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. Writing Body 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 this sort 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 Plague and 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.
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.
(Thanks for reading, my friends, and please be well. — Mark)
Tags: Aging, aids, criminalization, culture, gay, help others, hiv, politics, recovery, Sexuality
Posted in Book Review, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 5 Comments »
Friday, January 23rd, 2015
For twenty-five years I have been writing about living openly as a gay man living with HIV. Along the way I have spilled secrets, opened up about sex and relationships, highlighted the work of those who inspire me, come clean about my history of addiction and recovery, focused my video camera on international conferences and the lives of HIV negative gay men, and have found myself in some hot water once or twice.
Living out, loud and proud is an enormous privilege I don’t take lightly. There are countless people who don’t have supportive families or understanding workplaces or even friends to whom they can rely. And it is those people who are most often on my mind as I write this blog. Your comments and emails inspire and humble me, and that includes the criticism of my admittedly strong opinions. You make me think twice, very often after the fact, and you can be assured that you teach me.
So my nomination for Outstanding Blog as part of the national GLAAD Media Awards has me excited, flummoxed and feeling reflective. I wouldn’t be a good recovering addict if somewhere in my mind I didn’t feel unworthy. Like many of us living with a shame that never truly washes away, there is a part of me that feels like a fraud.
If you only knew me, it whispers, you wouldn’t accept me. You wouldn’t give me an award. Maybe you wouldn’t love me. It is the sad reverberation of growing up gay, of feeling socially damaged by HIV, of the guilt of having once turned to drugs to block my doubts and fears.
Today, I will not be bowed by misgivings and undeserved shame. I will even indulge my dangerous ego and admit that I’m terribly proud and feel like one of the Oscar nominees I track with religious verve. And that is the simple, elegant value of efforts like the GLAAD awards. They remind us that we’re okay, celebrated even, and it chips away at the internal homophobia we carry with us in quiet places.
The fact that the highly visible GLAAD Awards focus most notably on film and television depictions of LGBT people makes this situation all the more unreal. The glamour of it all appeals to every gay bone in my body.
Will there be a red carpet? Can I lose enough weight to walk it? Can I convince openly HIV positive fashion designer Mondo Guerra to lend me a jacket (I’m working on it)? Can I make a statement about how those of us living with HIV are crafting lives of joy and engagement and responsibility?
It might be more productive to shift the focus away from myself and share with you the other nominees in my category. They surely deserve that. GLAAD does us all a great service by bringing art and resources to our attention that may be unfamiliar to us. I’ve been stalking the other nominated blogs below and the inspiration to be found there has transformed a common platitude into a sincere fact: it is, without a doubt, an honor just to be nominated.
The Art of Transliness
The triumph of visible trans advocates like Laverne Cox makes headlines, but this blog provides insight on the ongoing, day-to-day challenges of the trans community.
My favorite blog name ever. This site devoted to queer women, or “girl-on-girl culture” as they describe it, is a hip blog mixing pop stories and stigma-bashing commentary.
Box Turtle Bulletin
Anti-gay rhetoric doesn’t stand a chance in the face of this site providing news, analysis, and fact-checking.
Holy Bullies and Headless Monsters
Lies in the name of God are still lies. This site analyzes and refutes the LGBT inaccuracies of religious conservative organizations.
Thank you, my friends. I have said that finding my voice through this blog has saved my life, and those words ring especially true today. And in case I don’t have the opportunity for an acceptance speech, allow me to thank the most important person now.
Michael, I love you. Being engaged to a man like you is the biggest reward of them all.
Tags: aids, barebacking, conferences, criminalization, culture, gay, gratitude, hiv, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 7 Comments »
Tuesday, January 13th, 2015
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.
When 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.
During my early years of recreational sex in the busy gay mecca, I caught The Clap so many times I called it The Applause.
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.
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.
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 34 Comments »
Tuesday, January 6th, 2015
They come from different cultures and regions of the world, but these fifteen HIV activists all share one important trait: a fierce devotion to HIV issues and a commitment to leave their mark on 2015.
Their advocacy has been noticed by some of the most prominent people in the HIV arena, so it seems fitting to allow some leading advocates to weigh in on each member of the list.
Load these advocates onto your Twitter feed or follow them on Facebook, and keep a close eye on what they have in store for the new year. If you are working in your community to make life better for those with HIV or to prevent new infections, please consider yourself an honorary member of this group. Thank you for your work!
“Indigenous People are those directly descended from a land that they have no political power over,” says Marama Pala. “Asking for consideration as a vulnerable population reveals another layer of discrimination and racism that speaks to the overall injustice of being born indigenous.”
She could well be speaking of Native Americans, but Marama is talking about her experience as a New Zealand Maori, the first people of New Zealand.
Marama was the first Maori woman to publicly disclose her HIV status, and her bravery has resulted in her becoming a powerful advocate for Maori and marginalized people. She serves on a multitude of foundations and networks devoted to raising the voices of indigenous peoples around the world and has held key positions in the planning of the last several international AIDS conferences. Her influence in 2015 will be no different.
“For generations indigenous peoples have suffered a genocidal impact from diseases ranging from influenza to small pox,” she said. “HIV is a modern day scourge that is harder to fight because it involves sex – a culturally taboo subject.”
“Marama is the rare blend of spirit, passion, intelligence and outspokenness that is needed to advance the issues of women and indigenous cultures affected by HIV around the world,” said Brent Allan, Executive Officer of Living Positive Victoria, Australia’s largest organization for and by people with HIV. “She is an outstanding example of the heart and soul inherent in our sisters living with HIV.”
Writer and occasional bomb thrower Josh Kruger reveals himself through a fierce, revelatory prose that lays bare all that he is or has ever been. He began writing while in a homeless shelter in 2012, and has since shared his experiences with crystal meth addiction, living with HIV, and the perilous gay dating pool. His work has wit and intimacy, and he’s been known to infuriate readers. In other words, he is a writer that demands to be read.
His column, “The Uncomfortable Whole,” appears in the Philadelphia Weekly and addresses any number of social ills, such as drug abuse, HIV stigma, and homophobia. He has also written for The Advocate and HIV Plus Magazine, and blogs regularly as a gay man with HIV for TheBody.com.
Too often, writers dealing with their own HIV infection temper their feelings or paper them over with political correctness, which is why Josh Kruger is someone to keep watching. This is not a writer who second guesses himself.
“Josh is a rare talent,” said Mathew Rodriguez, the community editor of TheBody.com who is making his own splash through his PrEP advocacy and his essays on race and gay community. “Josh’s writing seems almost contradictory — sharp yet breezy, challenging yet easy to read, hungry yet nourishing. He is unabashedly opinionated, and the best part is that we have only just seen him begin to stretch his skills writing about HIV. What will we see next? I’m not sure, but my attention is already rapt.”
“My role can best be described as an agitator,” Tommy Luckett says, and that’s quite a statement coming from an openly HIV positive transgender woman living in Little Rock, Arkansas. But Tommy’s passion and growing voice defy simple geography. She serves on the board of the Arkansas Transgender Equality Coalition and the health department’s Quality Care Advisory Board, yet still has time to advocate against Arkansas’ HIV criminalization statutes.
Tommy gracefully rejects stereotypes about transgender women. “I was in a relationship when I contracted HIV from my partner,” she said. “A common misconception is that trans women place themselves at high risks of contracting HIV by doing sex work and that’s not always the case. In order to have shelter, some trans women are forced into sex work.” Tommy doesn’t judge women making desperate choices, and even advocates for their safety and well-being. “Being caught with a certain number of condoms is against the law in some states,” she said. “In essence, the laws are contributing to the spike of HIV cases in the transgender community.”
Cecilia Chung, a leading transgender activist who serves on the Presidential Advisory Council on HIV/AIDS (PACHA), is a big fan of Tommy’s growing influence. “In the HIV sphere where voices of trans women living with HIV are most under represented, I am inspired by emerging leaders like Tommy. She brings a transwoman of color perspective from the southern states and a personal story that reflect the current landscape of the epidemic.”
Some consider him the best kept secret in HIV treatment activism. James Krellenstein has presented to the FDA and the CDC, mapped strategy alongside iconic activists, and become a respected voice within ACT UP New York City. What makes his growing influence all the more remarkable is the fact that James is 23 years old.
James recently spearheaded a successful campaign to convince the FDA to approve the Alere rapid HIV test (which can detect HIV sooner and more accurately than other tests) for use in non-laboratory settings like bars, clubs, or your local gay pride festival. The effort illustrates James’ dedication to improved HIV surveillance and greater funding and access to effective HIV prevention tools.
James co-founded ACT UP New York’s Prevention of HIV Action Group (PHAG) and regularly collaborates with Mark Harrington, the director of Treatment Action Group and no slouch in the brains department himself.
“James represents the future of AIDS treatment activism,” said prominent ACT UP member Peter Staley, who was profiled in the Oscar nominated documentary How to Survive a Plague. “This movement’s greatest legacy is a willingness to let science drive our health justice agenda. James reminds me of a young Mark Harrington or Spencer Cox – one of those rare wiz kids with a complete lack of intimidation about becoming the activist expert even the Anthony Fauci’s of the world admire.”
It can be disheartening to simply live as a sexually active gay man with HIV, and Australian Nic Holas doesn’t want to just counter that stigma. He wants to smash it. As a writer and activist, Nic co-founded The Institute of Many, a social support network of people living with HIV, and has spoken with fierce transparency about navigating the sexual landscape of the gay community.
Nic has made countless appearances on national television, documentaries, radio and online discussing HIV and is also a peer educator, an ENUF Ambassador, an ENDING HIV ambassador, and a facilitator for the Positive Leadership Development Institute Australia. And he’s just getting warmed up.
In 2015, Nic plans to continue to grow The Institute of Many, and deliver a challenge to its growing membership to take action on advocacy efforts.
“Nic represents a new generation of smart HIV activists who neither feel apologetic about their status nor want to use it to buy into a sex negativity which would deny the particular thrills and experiences of being a gay man,” said Dennis Altman, Professorial Fellow in Human Security at La Trobe University and author of more than a dozen books, most recently The End of the Homosexual? “This year, Nic emerged as a formidable spokesperson for people who are positive, and, equally important, as someone who reminds us that social justice demands concerns for more than those in our immediate tribe.”
Of all the various populations of people living with HIV, it’s ironic that none may be as misunderstood as those who have faced HIV stigma since the hospital delivery room: those born with HIV. Los Angeles children’s advocate Grissel Granados hopes to change that.
Grissel is looking forward to the completion of a documentary she has produced, We’re Still Here, that focuses on her journey trying to make sense of her experience as a young adult born with HIV. She believes the project can help other people find community where there wasn’t one before. “For the first time on screen,” says Grissel, “people who were born with HIV are telling our stories in our own words and on our own terms.” The trailer for the film was just released.
Her own life circumstance has clearly informed her work at Children’s Hospital Los Angeles, where she works in the Division of Adolescent and Young Adult Medicine, and Grissel intends to use her new seat on the President’s Advisory Council on HIV/AIDS to take on health disparities among youth and young adults.
“Grissel is a fierce advocate who leads from the heart,” said Naina Khanna, the influential director of the Positive Women’s Network USA. “She is a skillful bridge builder that finds connections between complex issues – ranging from immigration to sexual rights and HIV. I am really excited to see where Grissel’s future will take her.”
When Kerry Thomas addressed the “HIV Is Not A Crime” conference in Grinnell, Iowa in 2014, he did so via a phone call from his prison cell in Idaho. And his remarks held the attendees spellbound for nearly an hour.
Kerry is presently serving 30 years for “HIV non-disclosure” (or not telling his sex partner he is living with HIV) even though he used condoms, had an undetectable viral load, and did not transmit HIV. His case has become a rallying cry for advocates around the world, and Kerry’s grace and humility under extraordinary circumstances have only increased his profile.
“Kerry has demonstrated courage, strength and leadership from behind the walls of prison,” said lifelong activist and author Sean Strub, founder of The SERO Project, a network of people living with HIV working to reform HIV criminalization statutes. “He is committed to justice for everyone unfairly prosecuted because of their HIV status, even as he struggles to find justice for himself.”
Kerry has a hearing in March on a motion for post-conviction relief. If he has been this inspiring from behind bars, just imagine his effectiveness as a free man.
A year ago, Ken Almanza might never have believed he would find himself interviewed by a television station in the Netherlands or appearing on the front page of the Los Angeles Times. But the rising activist’s engaging and personal video blogs about beginning PrEP (pre-exposure prophylaxis) has endeared him to advocates everywhere.
The social repercussions Ken experienced because of his blogs about PrEP haven’t slowed him down. He has taken on a new role at APLA Health and Wellness with their Crystal Meth Harm Reduction program – another focus of advocacy for Ken, who produced a film about his brother’s battle with addiction and the effect it had on his family. Now, APLA Health and Wellness has plans to incorporate PrEP education into their crystal meth program, which would combine two crucial issues that are important to Ken.
“Very few leaders can bridge the gap between intelligence, activism, and sheer magnetism,” said Damon L. Jacobs, a nationally recognized PrEP advocate and therapist in New York City, who believes that Ken has a “passion for breaking the glass ceiling against imposed limits on sexual education, personal freedom, and gay Latino expression.”
BENJAMIN T. Di’COSTA
When Benjamin T. Di’Costa saw the treatment a transgender friend received while in the hospital last year, it changed him forever. Benjamin, 24, stayed by his friend’s side and witnessed a real lack of trans-competent care by medical providers. The experience only bolstered his commitment to the rights of transgender people.
Demonstrating empathy for others is nothing new to Benjamin, who is HIV negative and has worked as a Youth and Transgender Specialist for Latinos Salud, the largest minority HIV/AIDS organization in the state of Florida.
Along the way Benjamin has raised his voice as an HIV negative cisgender bisexual male by creating posts and videos for The Poz+ Life, a site devoted to sharing what it is like to be affected by HIV and other disparities. His social media (and selfie) skills are first rate, and Benjamin’s voice will doubtlessly grow stronger in 2015.
“Benjamin is one of the most promising young advocates on the scene,” said Jack Mackenroth, the reigning king of social media who just had another triumph with his #WeareALLclean HIV stigma campaign. “He has a real humility about him, and his willingness to reach out and understand other communities is exactly the kind of thoughtful engagement that brings people together. Too many of us focus on our differences, and Benjamin shows that there is a better way.”
In the city of Midrand Gauteng in south Africa, Yvette Raphael stays busy running her catering company. “I do it because I love making people happy and every meal is prepared with love,” she says. Love is also something Yvette shares generously with her extended family, including three young girls living with HIV for whom she serves as guardian and mentor.
None of these responsibilities, though, have kept her from becoming an emerging voice for women living with the virus.
Diagnosed with HIV in 2000, Yvette contributes to a number of national and global efforts, including working in support of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the Campaign to End AIDS, and serving as a 2014 AIDS Vaccine Advocacy Coalition (AVAC) Fellow associated with Johns Hopkins University. Her influence is growing faster than a baking souffle.
“Yvette is a rare breath of fresh activism in a time in the AIDS movement that needs more advocacy and policy change, not less,” said Dazon Dixon Diallo, founder of Sisterlove and one of the preeminent global voices for HIV among women. “She comes to the movement with a fierce brilliance and a fearless voice for women, youth and the African LGBTQ community. Yvette is a young, single mother who works hard to defend and protect the human rights of all, especially young girls. She rocks on all fronts!”
ERIC PAUL LEUE
Few people can hold a conversation about their leather man titles and Tenofovir disoproxil fumarate drug levels at the same time. But that’s exactly what you get with Mr. Los Angeles Leather Eric Paul Leue, a self-motivated transplant from Berlin who has been able to generate great conversations (and often controversy) around kink, sex, PrEP, pleasure, and science.
Eric famously broke ties with the AIDS Healthcare Foundation, for whom he had been featured in an HIV testing campaign last year, when the director of the agency stated his (widely maligned) objection to PrEP as a prevention tool. Since then, the current Los Angeles Mr. Leather has put his activism into overdrive, even creating a petition to have the director of AIDS Healthcare Foundation removed.
When discussing PrEP, its side effects and efficacy, the devil is the details and Eric knows nearly all of them. His easy going style during public events — including a discussion about PrEP with at least one skeptic at a 2014 World AIDS Day forum in Palm Springs – demonstrates that Eric can find common ground and show respect for those who don’t share his views entirely. For a topic rife with conflict and antagonism, that is no small feat.
“In his twin roles as Director of Sexual Health and Advocacy for Kink.com, Eric has expanded his HIV prevention efforts into the underserved communities of kink and leather,” said author and quintessential leather man Guy Baldwin, M.S., who was inducted into the Leather Hall of Fame in 2012. “The world of radical sexuality is lucky to have the force of nature that is Eric Leue.”
(Photo credit: Eric Schwabel)
If you did not vote in the last midterm election, don’t mention that to Tony Christon-Walker. You’ll get a passionate lecture on why local and state elections are actually more important than presidential ones. And make no mistake, the man knows what he is talking about.
Working as a Civic Engagement Coordinator for AIDS Alabama, Tony understands firsthand the damage state politics can do to those living with HIV. He has seen Alabama, one of our poorest states, refuse to expand Medicaid, effectively denying health insurance to those who need it most (of the estimated four million people who fall within this coverage gap, the vast majority are in the South). Tony devotes his energies to getting people registered, restoring the voting rights of ex-felons, and making sure you know that every election matters.
Advocacy has been a lifelong pursuit for Tony, who once learned Spanish just so he could communicate with his clients at AIDS Alabama more effectively. In 2015, the newly married advocate will be working to create coalitions among those who are engaged in political efforts – immigration, HIV, healthcare reform – that are closely aligned.
“I’ve watched Tony with a sense of admiration and awe for a number of years,” said Kathie Hiers, a fellow Alabamian who serves as president of the National AIDS Housing Coalition. “He exemplifies the very best of grass roots activism, and proves the adage that all politics are local. Thank goodness for Tony, because he is special.”
It is tempting to say that Marco Castro-Bojorquez is the hardest working advocate on the scene, but one thing is for sure: he is among the busiest.
Born and raised on the Mexican Pacific coast, Marco left his country for political reasons and has lived in California for the past 20 years. And he hasn’t exactly been wasting his time. Marco is a community educator at Lambda Legal, the oldest and largest national legal organization committed to achieving full recognition of the civil rights of LGBT people and people with HIV. He has taken particular interest in the plight of immigrants and migrants living with HIV and has begun plans to create a support network for them.
Somehow, Marco has managed to create several short documentaries in his spare time, including the upcoming El Canto del Colibri (“The Hummingbird Song”), a film about Latino fathers dealing with having an LGBT member in the family. It will premiere in 2015 and was inspired in part by a pilot family acceptance program he has led at Lambda for the last three years.
“Marco is such an amazing individual,” said Bamby Salcedo, President of Coalicion Translatina, a national advocacy organization serving trans Latina immigrants living in the United States. “He just helped me organize a protest about violence against trans women of color. What drives Marco is his passion for the betterment of everyone.”
Growing up on the hard scrabble streets of Detroit, Guy Anthony had no role models around him as a “black, slightly effeminate gay man,” he says. And that’s what his growing advocacy voice has been all about. The young activist and author (Pos(+)itively Beautiful: A Book of Affirmations, Advice & Advocacy) wants to provide the kind of compassionate guidance to others that he never had.
Guy facilitates the only support group for young, HIV positive black men in Washington, DC. It’s one of his duties as a treatment adherence coordinator at Us Helping Us, an agency addressing the needs of gay men of color. The agency has become a hub for HIV treatment, prevention, and mental health services.
Mental health is something Guy intends to move to the forefront of his efforts in 2015, and he begins the year with a splash by speaking at the National AIDS Education and Services for Minorities conference in January. He is convinced that mental health services are critical to those who test positive or are at risk, and wants to make it synonymous with case management.
“It’s exciting to see Guy included on this list,” said Paul Kawata, director of the National Minority AIDS Council and the longest serving national HIV agency head in the country. “He’s a poised, charismatic young man who has accomplished a multitude of things, and he’s not even 30! Guy is surely one to watch in 2015.”
This young, brilliant German researcher is obsessed with t-cells, and thank goodness for that. As Chief of the Cellular Immunology Section at U.S. Military HIV Research Program, Hendrik Streeck is working to figure out how these important cells – which serve as the gateway to HIV infection – react during initial infection, and how they might be manipulated by a potential vaccine.
In other words, Hendrik wants to end HIV as we know it, by getting to the bottom of how t-cells work – and how a vaccine can prevent them from ever getting infected with HIV. It is a segment of HIV research that requires tremendous creativity and technical wizardry, and Hendrik is just one of many researchers leading the charge.
“Hendrik is unique among researchers in his ability to combine expertise in the basic biology of the virus with innovative HIV therapies,” said Nathalia Holt, a fellow HIV researcher and author of CURED: How the Berlin Patients Defeated HIV and Forever Changed Medical Science. “In 2015 Hendrik will leading a new institute at the University of Duisburg-Essen in Germany dedicated to finding a cure and vaccine for HIV. We can expect big things from him this year.”
Tags: aids, barebacking, conferences, criminalization, culture, gay, help others, hiv, meth, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
Friday, December 12th, 2014
(I can’t resist posting this each Holiday Season. The video below is my very favorite, of the more than 60 I have produced over the years. Enjoy!)
My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.
And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.
Now just take that in for a moment. My family was enthusiastically participating in a video about my life with HIV. And they were much more concerned with choosing a fun holiday outfit than being publicly associated with their HIV positive relative. For them, sitting down for an interview about my HIV status, well, that was the easy part. They had no problem being candid about my HIV, as you will see.
I am an extremely blessed and fortunate man.
When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?
Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.
The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.
You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.
Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.
p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.
(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)
Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen
1 cup shortening
3/4 cup sugar
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring
1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).