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The Odds of Love

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This story will never be as romantic as I would like it to be. And it could never be as romantic as it has been to live it.

MarkMichaelAIDS2012On the evening of July 22, 2012, Michael Mitchell went to a mixer at Cobalt, a gay club in Washington, DC. The international AIDS conference was being held in town and Michael, a DC resident who had once served as director of an AIDS agency, decided on a whim to go check it out.

I had been shooting video all day for my video blog conference coverage and thought the name of the mixer -- Meet the Men of AIDS2012! - had an inviting ring to it.

During the reception Michael and I engaged in some mutual cruising from across the bar before Michael, God bless him, made his move. He walked up and introduced himself. Even with dance music thumping and a boisterous crowd surrounding us, he had an adorable humility about him that came through loud and clear.

So did the remnants of a southern twang, and we quickly established we were both southerners born in Alabama. We talked about his work implementing the Affordable Care Act and I was struck by how proud he was to help provide health insurance to millions of Americans.

"I'm a blogger, I write about HIV," I said after a while.

"Oh, I know," Michael answered, and he grinned. "I've been reading you for years." He leaned in closer and flexed his dimples. "And you should get new pictures. You're much better looking in person."

I swallowed the line like a cold glass of sweet tea.

For the remaining nights of the conference, I sat at the foot of Michael's bed and edited video footage into the wee hours while he slept. We toured the Global Village at the conference center and got our picture taken (above). We held hands, casually and almost immediately. When I left a few days later there were tears at the bus stop.

You would think that after many years writing about living joyfully with HIV that my own happiness would be a given. That's hardly been the case. After several false starts and some complete misfires -- primarily due to my own deficiencies -- I had stopped believing I would ever get the whole relationship thing right. What are the odds of getting another chance, after so many wasted ones?

"I am not a very good boyfriend," I told Michael in a frank conversation early on, the kind that is meant to drive the poor guy away before he is taken hostage. "I've either been terribly immature or in active drug addiction. I've never been faithful, or even very thoughtful."

"That doesn't mean you can't be," he replied, as if it were the simplest response in the world, as if none of my past faults had any bearing on the here and now. Suddenly it clicked, a switch in my head I had been grappling with my whole adult life, and Michael's statement made perfect sense. Why couldn't I just behave differently, and do it because I love Michael and to hurt him would crush me?

I am going to marry that man.

On June 6, a small group of friends and family will gather in the lush woods of Pennsylvania a few feet away from where I proposed on Christmas Eve (below). During our ceremony I will make promises that I have every intention, at long, long last, of keeping. Our vows will be emotional but a mere formality, because for three years we have adored one another without a single cruel word between us.

Engagement Horizonatal crop

 

When I was growing up I could never find anything in the house; the right socks, my school assignment, my lunch money. I would call downstairs to mother and complain that I just couldn't find it, whatever it was.

"You haven't found it yet," she would reply with the preternatural calm that had mercifully accompanied her through years of raising six children.

My search has continued, for those things misplaced or never claimed to begin with, and I have actually found a few of them. Feeling comfortable in my own skin. Self-esteem. Sobriety. An acceptance of life on its own terms. An unselfish love for another human being.

The search may have been maddening, but the guidance of a good mom usually holds true.

I just hadn't found them yet.

Mark

AIDS Healthcare Foundation (AHF) has quietly reinstated funding to a Louisiana AIDS advocacy event, two weeks after pulling their support because one of its organizers is involved in a whistleblower lawsuit against AHF. And they really mean it this time - and would prefer that we believe the withdrawal of support never happened.

LAAN event picThe 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 (the 2014 event at right), organized by the Louisiana AIDS Advocacy Network (LAAN). Jack Carrel, one of the plaintiffs named in the whistleblower lawsuit against AHF, is a volunteer helping to organize the event.

The seemingly punitive action against those working with Carrel and the people they serve is backed up by email and voice mail records, but don't tell that to AHF, which has taken a peculiar stance on the withdrawal of support: they didn't do it.

In an April 17 email to Dorian-gray Alexander, Chair of LAAN, from AHF Southern Bureau Chief Michael Kahane, Kahane writes:

This email will confirm that AHF NEVER reversed its position to support LAAN by providing transportation to this event. In point of fact, (AHF staffer) has continued working to reserve the bus and I believe she has communicated all of these details to LAAN. I'm really not sure what more we can do to reassure you that we are committed to supporting LAAN on this issue, but if there is something more please let me know. But please also accept this email as a commitment that AHF is providing transportation for LAAN to the event (...)

Well, if it's in writing from AHF, it must be true. Except that their withdrawal of funding for the event had also been in writing, in an April 9 email from the local AHF advocacy staffer to whistleblower Jack Carrel himself. That email read:

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.

Sounds pretty definitive. And all official-sounding and stuff. It seems unlikely the staffer was having a psychic break when she sent it. And in case there was any doubt, the AHF staffer also left Carrel a voice message in which she explicitly spelled out why AHF was pulling the funds.

"... 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..."

So you can imagine how confused LAAN Chair Alexander was when AHF told him (soon after my posting on all this) that AHF was, in fact, committed to the event. Alexander asked for it in writing. Again.

"I didn't want to make assumptions," Alexander told me. "I have had some back-and-forth with AHF in the last two weeks. They agreed to continue working with us, and I just felt I needed someone to confirm it in writing."

Let's all hope AHF's commitment to serving people with HIV in Louisiana is worth, well, the computer screen it's written on. AHF's denial that the support was withdrawn in the first place not only defies the facts, it comes without explanation - or apology.

"That would have been nice," Alexander said. "But I didn't ask for an apology." And AHF could always deny that they apologized anyway. Or that they ever met Dorian-gray Alexander. Or that they know what an email looks like or how to read.

LAAN logo 2The loss of support had sent LAAN scrambling, and they started a GoFundMe page to make up for the loss. The $1,600 raised will now help provide food and lodging for the people attending their advocacy event, slated for May 19. That is, if AHF sticks to their most recent pronouncement.

"We're all volunteers at LAAN," said Alexander. "And this is a tough state to advocate for HIV issues." Louisiana does not have Medicaid expansion and New Orleans ranks second in the nation of cities with new HIV infections.

It's good to know AHF and their local "advocacy consultant" has (re)committed to an actual advocacy event in a state that desperately needs the help.

Fingers crossed.

Mark

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

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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)



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  • Trophyboy: It's not just a coincidence that Michael Weinstein strongly resembles read more
  • Lou: With both the government and state not wanting any involvement, read more
  • Dan Bouchard: Mark, thanks for a fantastic and thorough article. For years read more
  • 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
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