Posts Tagged ‘physical’
Monday, August 22nd, 2016
TO: Richard Larison, CEO, Chase Brexton
FROM: Your Executive Assistant
RE: Five points about the recent unpleasantness
I know you’ve asked me not to disturb you when you are sealed in your hyperbaric chamber. Regrettably, it has been days since you have emerged and there are developments. (Note to self: throw something over Mr. Larison’s glass tomb before leaving office; the housekeeping staff is complaining again; use some of those stored AIDS Quilt panels Mr. Larison found “needlessly depressing.”)
Your termination of the five managers here at Chase Brexton appears to have had an unintended effect. Rather than frighten the indentured ungrateful uppity low-level employees into rejecting their own unionizing effort, the firings appear to have emboldened them. It would appear they do, in fact, have minds of their own. And this, only days before their vote to unionize on August 25th.
At the risk of upsetting you again (I have replaced your shattered “World’s Greatest Boss” coffee mug and cleaned the stains; my injuries were minor), allow me to enumerate five key developments of the last week.
1. A protest was held Friday. They don’t like us.
Since I don’t believe you can hear from within your sealed chamber (and if so, I swear to you that the existential cries of “why me?” and “what cruel hell is this?” were not coming from my cubicle), allow me to share the unsettling news that the protest against our union-busting efforts was spirited and well attended. It also included many members of the gay, lesbian, and transgender community for whom this agency was founded, which explains why no one in the executive offices has any idea who they are.
The media has caught wind of all this, I regret to say. Lots of stories that present our actions accurately in unfavorable light, including an Op-Ed in the Baltimore Sun by two of our own medical physicians (the doctors actually spill the beans on our efforts to limit doctor-patient time and cut salaries). A #SaveChaseBrexton web page with photo and videos exists, and the protestors and speakers look, well, empowered, although I know how you despise that word.
2. It appears we are screwing with the wrong people.
It was reasonable to expect that the recent terminations would be as uneventful as the past (two hundred? three?) firings during your four-year reign occupation tenure (I have prepared your weekly “Chopping Block” list; we can go alphabetically, pick someone at random, or I believe you enjoyed tossing darts at names). However, these recent firings appear to have galvanized employees, volunteers, and clinic patients alike.
The protest was attended by several elected officials, such as Maryland delegate Cheryl Glenn, who delivered a rousing indictment of our union-busting efforts. She also ended with a song that sounded communist to me; I can plant social media comments to that effect if you think it would be helpful.
3. Those union-busting advisors we hired might be actual criminals.
Yes, I know the three of you bonded over your shared love of hunting endangered species, but I have misgivings. It would appear that the two gentlemen who conducted our intimidation misinformation educational session about unions for employees, Martin Dreiss and Jon J. Burress, have faced charges between them ranging from fraud and conspiracy to embezzlement. I understand you find this endearing, sir, but we might consider avoiding these “union avoidance” fellows in the future. We have our own foggy legalities to negotiate, such as…
4. They found out we faked that letter to the patients of the nurse you fired.
You know that letter we sent to the patients of infidel sacrificial lamb nurse practitioner Jill Crank, making it look like she left all by herself and we totally, absolutely had nothing to do with it? Turns out people actually read the damn thing. They quickly deciphered the fact it wasn’t she who sent it, probably due to the multiple spelling and grammatical errors.
We’re not completely certain that faking a letter from Ms. Crank without her consent is precisely legal, but that ethical ship has sailed, I think you will agree.
Speaking of which, sir, may I add how delightful it is to conduct ourselves so freely, unmoored from complex concepts such as integrity or loyalty to Chase Brexton’s community legacy! This is all a direct result of your terrifying brave leadership, Mr. Larison.
5. Our new committee to “rebuild trust” has people laughing. A great deal.
Regrettably, the new President of Operations position you announced carries the moniker of POO, which is a fair assessment of the resume of this new hire, if we’re being honest. As vexing as you find the need for relevant experience, it appears that Mr. Joseph Lavelle, hired to smooth over staff conflict, has no LGBT-focused background, has no experience in a community-based clinical setting, and worked for gargantuan medical conglomerates that got sued a lot. But that’s not the funny part.
If you venture beyond your nesting place office, you may hear giggling coming from “the minimals,” as you call them. It seems that the staff email from Board Chair Carolyn Kennedy announcing the formation of an ad-hoc committee has been met with derision, if not sustained guffaws. The phrase “rebuild your trust” appears to be the big punch line. One might even say we are closing the barn door after the unfair labor practices horses have left, but I know you find popular expressions that do not end with “therefore improving our bottom line” to be most disagreeable.
Lastly, much of the attention now appears to be focused on removing you as CEO. Should this abomination occur, rest assured I will follow you, hyperbaric chamber in tow. You frighten me, yes, and you have single-handedly crippled our reputation throughout Baltimore, but my personal value system is so damaged I am actually willing to trust your stewardship despite all evidence to the contrary.
Which, come to think of it, would make me an excellent member of the Board.
Your Executive Assistant
(In the latest non-satiric news: Victory (for now)! The first group of Chase Brexton employees eligible to join the union voted on August 25 IN FAVOR of joining SEIU1199. And get this: the margin was 87 to 9. Moire than ever, it appears the tactics of management have backfired. Management will almost certainly attempt to contest the results, and this struggle may drag on, continuing to destroy the reputation of Chase Brexton. For the moment, employees have real reason to celebrate. They are unified. — Mark)
Tuesday, August 16th, 2016
Jill Crank misses her patients terribly. And she is worried about them.
“The last thing I want is for them to think I abandoned them,” Jill said. “I’m afraid they might not know what to do.”
During almost nine years as a nurse practitioner at Chase Brexton Health Care in Baltimore, and more recently as their Assistant Medical Director, Jill had a caseload of about 600 clients. It included patients, largely from the LGBT community, who were being helped with mental health issues, HIV treatment and prevention, transgender health, and addiction and recovery services.
They are the kind of patients who rely on the trust built between them and their healthcare provider. They are often awash in social stigma and barriers to quality care. They count on people like Jill Crank.
“They trusted me, yes,” Jill says. She is still finding it difficult to discuss them without getting emotional. “That trust translated into our making positive decisions about their health together. So many of them were in the middle of life-changing issues, like choosing to recover from addiction or deciding on new HIV treatment. These issues are not easily resolved by a quick fix-it visit with a new provider.”
Those crucial relationships were abruptly broken last week, when Jill and four other management-level employees at Chase Brexton, the largest provider of clinical services to Baltimore’s most vulnerable populations, were unceremoniously fired from their jobs.
All five employees had exemplary records of service, some dating back decades. They have been honored for their work, received glowing performance reviews, and had virtually no warning their careers at Chase Brexton were about to end.
That end came as the result of a chillingly vindictive move on the part of Chase Brexton senior management. With a union organizing effort underway by employees — who cite an unreasonable workload that is having an effect on the quality of patient care – senior management evidently tried one of the oldest, and most cruelly transparent, tricks in the playbook. They fired managers (who are not eligible to join the union themselves but might be seen as supportive of the change) in an apparent effort to intimidate those seeking to join the union.
To speak to those five employees, who were interviewed individually for this story, is to hear a litany of confusion and heartbreak. The word “devastated” is used by all of them. Without exception, they mention a deep concern for their patients, who were notified of the disappearance of their provider without explanation.
“I had dedicated my life to that agency,” said Warren Conner, a case management supervisor who began his career at Chase Brexton as an intern more than 21 years ago.
His statement is hardly an exaggeration for someone who considered his professional co-workers part of his family. “I met my husband there, years ago. He was working in the mental health department. We’ve been together ever since. I really thought I would retire from there,” he said.
Fired without severance pay despite stellar performance reviews, Warren fears for his future. The seniority he had achieved isn’t easily translatable to the current job market. “I’m working on my resume,” he said. “But I haven’t looked for a job in 21 years. I’m not sure how to do it, honestly.”
Ken Ruby, the fired Director of Psychosocial Services who devoted 22 years of his life to the agency, still has great pride in the agency and his work there, despite the circumstances. “Chase Brexton has been a huge player in HIV treatment and prevention,” he said, noting their recent efforts to educate the community about the prevention strategy PrEP, the pill proven to prevent HIV transmission.
“I saw Chase Brexton helping to achieve zero HIV transmissions. That was our goal. I just don’t see how that won’t be slowed down, since several of us who were fired were really involved in setting up PrEP services.”
“I had so many ideas, so many projects left to do,” Ken said, and then his emotions well up again and his voice breaks. “I feel like I’ve lost a piece of me, and it’s still there, in that agency,” he said.
Brian Owens is Lead Organizer for SEIU District 1199, the healthcare and social service union that Chase Brexton employees are trying to join. He believes the firings were an attempt to “coerce and intimidate employees eligible to join the union,” but that the move has backfired tremendously. “It has galvanized the employees to speak up for themselves and for their co-workers who were fired,” he said.
Brian points to the unionization of Whitman-Walker twenty years ago, the Capitol’s largest provider of HIV services. In that case, management allowed union organizing to take its course without their interference.
By contrast, Chase Brexton employees received an email earlier this month from Richard L. Larison, the now-embattled CEO, urging them not to join the union and promising educational sessions that would convince them not to. Instead, those meetings have become an outlet for employees to express their outrage over the dismissals.
Community backlash has been swift and unified. More than a dozen local LGBTQ organizations have signed an open letter posted by FreeState Justice denouncing the firings and urging Chase Brexton to support the rights of workers. A petition stating that CEO Larison is “failing the community” and calling to reinstate the fired employees has already gathered more than 1,000 signatures.
And coming on Friday, a community protest is scheduled on the steps of Chase Brexton’s Mt Vernon location. Even Maryland State Delegate Maggie McIntosh has posted her displeasure with the union-busting, asking Chase Brexton to “rehire the terminated employees and allow the union election process to proceed free of intimidation or interference.”
What makes the union pushback by Chase Brexton management so curious is the fact that unionizing is just the sort of progressive value that one would expect from an agency that was founded as a health clinic for gay men. “At this point,” said union organizer Brian Owens, “the folks who are running Chase Brexton do not share those progressive ideals.”
That shift is being laid firmly at the feet of CEO Larison, who is widely viewed as having abandoned the collaborative culture Chase Brexton once enjoyed, replacing it with a hard-hitting management style that has seen the departure or firing of dozens of employees at every level during his four-year tenure. His office did not respond to an interview request and there has been no formal response to recent events from senior management.
The silence has left the five terminated employees to sort out their emotions, and their lives, on their own. “Over the past week I have felt sad, angry, and extremely frustrated,” said Catherine Fowler, a nurse manager who was fired. “I’m very concerned for my patients, for my nursing team, and for the organization and its future.”
“I don’t want to go somewhere else,” said fired programs manager Bethany Henderson. “There’s nothing else like this. I want my job back. I would go back in a heartbeat.”
Others are not so sure. They are conflicted, caught between wanting to support the efforts to reinstate them while still feeling the bruises inflicted by an agency they no longer trust.
They are not paralyzed by their confusion, however. The five employees have retained an attorney who has filed action with the National Labor Relations Board in an effort to stall the terminations, citing unfair labor practices.
Meanwhile, at the main offices of Chase Brexton in Mt Vernon, where all five of the former employees worked, the main pavilion is undergoing repairs. The loud and messy activity is a fitting metaphor for the turmoil the agency is experiencing.
Enormous jackhammers are destroying the foundation. Bulldozers are collecting the concrete debris. The destruction is reverberating through the underground garage and thunderous shudders can be felt in the offices several floors above.
The sound is deafening.
Tuesday, August 2nd, 2016
The International Olympic Committee (IOC) is a very touchy organization, most especially when it comes to the Olympic rings. They guard their trademark jealously and litigiously, commonly suing anyone who dares to approximate the iconic rings for their own purposes. Even local street vendors during the Games have been shut down for violating copyright.
Anthony Braswell wasn’t thinking about that when he and a co-worker came up with a dangerous idea. It was 1995, and Atlanta was in the height of Olympic fever as the city prepared to host the 1996 Summer Games.
Braswell served as Director of the Grady Health System Infectious Disease Program (IDP), Atlanta’s new HIV clinic. One day he and his medical director, Dr. Jeff Lennox, were chatting about the enormous HIV education opportunity the Games presented. If only they could garner the attention of the worldwide media that would soon be streaming into the city for a two-week stay.
“A basket of condoms was sitting on the conference table,” Braswell said in an interview with My Fabulous Disease. “Jeff took five condoms out and starting arranging them on the table, and joked that we should make the Olympic rings out of them. I remember looking at him and saying, ‘yeah. Play safe.’ And that is how it started.”
At the time, they didn’t burden themselves with whether or not creating such a campaign was legal, or what the response of the mighty IOC might be. Or exactly how it might be done. They just started working.
“We didn’t think about next steps,” said Braswell. “We were just enjoying the simplicity of the message. There was no budget, no money at all for this idea.” That problem solved itself when people began offering free services to design, photograph, print, and distribute a full-color poster of the fledgling idea.
A marketing company in Los Angeles stepped in with a photographer and studio time. “They took great care in matching the color of the condoms to the Olympic ring colors,” said Braswell. “They also learned that the lubricated condoms caused damage to their camera lens, so they had to scrap those and find unlubricated ones.”
When the drafts of the poster arrived from a volunteer marketing company, Braswell couldn’t believe that “our crazy idea came to life. But it was missing something.”
Meeting with others on his clinic staff, the group realized the “Play Safe” message simply would not translate to scores of international Olympic visitors. “To be effective we needed to communicate with many different nationalities, many different cultures,” Braswell recalled, “so we contacted all sorts of international groups to determine how the ‘play safe’ message would translate.”
They added a border to the central image that spells out the “play safe” message in eighteen languages. “The hardest one was Chinese,” said Braswell. “There were no symbols that delivered the message of safe sex, and we wound up saying ‘have good sex.’ But they did not have a symbol for ‘sex,’ either, so in the text we actually had to spell out the word in English.”
A final graphic detail was adding the phone number for the Georgia AIDS Information Line, a number that still operates today. “We didn’t ask their permission,” Braswell said, because he wanted to protect them.
By then, a growing array of Atlanta HIV advocates, from gay men to the staff of AIDS service agencies to health department employees, had heard of the campaign plans and stood ready to accomplish the most daunting task of all: distributing the 750,000 copies of the poster, which a Los Angeles movie studio had paid to print and shipped directly to Braswell’s home.
“The weekend before the Olympics, several large trucks pulled up in front of my house,” Braswell said. “Over one thousand boxes were on them. I was horrified. We filled every inch of my house, floor to ceiling with boxes, and there were still more to go. We took one truck to the clinic and hid about 400 boxes in the storeroom. Even my neighbor put a hundred boxes in her living room.”
Braswell, and the army of volunteers ready to unleash the campaign, knew full well how much the poster would infuriate the IOC. Any potential fallout very likely emboldened them, as much for the publicity as for the fact there was no love lost between the citizens of Atlanta and the IOC. The aloof and arrogant president of the IOC, Juan Antonio Samaranch, had actually asked locals to address him as “your excellency,” a request that went over like stale cornbread in a Southern city so unpretentious it featured a fleet of pickup trucks in its opening ceremonies.
On the opening weekend of the Atlanta Olympic Games, the plan was executed. “It was all very covert,” said Braswell. “Friends working in the Olympic Village helped us sneak the posters in.” Meanwhile, other volunteers had jobs at the hotels, including those where media was staying, so under every door they slipped press packets that included the poster and a statement about the need for AIDS awareness and safer sex materials. The poster was wall-papered on light posts, in store windows and in restaurants throughout the city.
Figures differ about the availability and number of condoms distributed in Olympic villages over the years. In a recent Slate article, Atlanta in 1996 shows a significant dip from the number of condoms distributed in previous Olympic villages – and even these figures are disputed.
Braswell doesn’t believe many condoms were distributed in Atlanta’s Olympic village. “When we asked about making condoms available, the Atlanta Olympic Committee said no, telling us that there would be no sex in the village. Oh my God.” The attitude contrasts sharply with the 450,000 condoms that will be made available to athletes in Rio. “What a different world we live in now,” said Braswell.
The 1996 poster effort, once the Games began and the materials got out, yielded… not much. At first.
“For a couple of days we heard nothing,” said Braswell. “And then the press began. Officials from the IOC and the Atlanta committee were looking for the people ‘who had done this to the Olympic rings.’”
In a city containing more press than any place on earth during that time, the Olympic condom rings gained traction, leading to officials having to answer questions about whether or not there was an “official condom of the 1996 Olympic Games.” Reporters gleefully reported the answer that no, there was not.
The attention was glorious but short-lived. During the second weekend of the Games, a bomb was detonated in Centennial Olympic Park, an act of homegrown terrorism that stole the headlines and broke the hearts of the good people of Atlanta.
The tragedy took the heat off of the condom poster controversy and shifted attention to the very serious business of security and the bomb’s aftermath. The poster disappeared from media reports as quickly as it had appeared.
As with most acts of activism, whether a flash mob or a protest, the Olympic condom ring poster found an audience, made its point, and was gone.
“In the end, the campaign worked,” Braswell said. “I am so proud of the people who believed in this effort. And this was twenty years ago, before the power of social media!”
“No matter,” Braswell concludes. “It worked. And we pulled it off.”
(Condom distribution chart: Holly Allen, Slate.)
Tuesday, July 26th, 2016
The people, the parties, the protests! AIDS2016, the international AIDS conference held in Durban, South Africa from July 16-22, had it all. And it was my privilege to bring you the stunning sights and sounds of the gathering, sponsored by The Global Forum of MSM and HIV. My special thanks, too, to my amazing videographer, Australian HIV advocate Theo Tsipiras.
My coverage was featured on the most comprehensive HIV resource on the net, TheBody.com (you can also view my full set of videos there), as well as on MSMGF.org and even on Queerty.com, the world’s largest pop culture site for gay men.
So here they are, each of the five video blogs I produced at AIDS2016, below.
Allow me to let these videos, and the inspiring people from around the world who populate them, to speak for themselves. Enjoy!
The MSMGF Pre-Conference (Gay Day!)
The MSMGF pre-conference is uniquely designed to address the issues and needs of men who have sex with men (MSM) around the world.
The Thrilling Treatment Access March on the Streets of Durban
The may be no way to adequately describe the intensity of the #Treatment4All march that wound its way through the streets of Durban. Fortunately, my videographer Theo and I dropped ourselves into the middle of the action. The results are amazing.
BONUS Video: An Interview with PrEP Advocate Jim Pickett
An HIV+ Gay Man is Erased by the Military and a Plenary Protest
The advocacy around HIV criminalization has grown enormously is just the last two years. I take you to the Beyond Blame pre-conference, and then jump into a demonstration by criminalization activists at an AIDS2016 plenary – which included the newly minted activists and grandchildren of icon Elizabeth Taylor, working on behalf of the Elizabeth Taylor AIDS Foundation.
Also: a very candid gay activist from New Zealand confides with me about just how cruisy the conference is for he and his fellow advocates. Hint: activists ready to hook up are less than 20 feet away.
The Eye-Popping Global Village and a Party Without Pants
In my final report from AIDS2016, we immerse ourselves in the sights and awesome advocates of the Global Village – and then let off some steam at “No Pants, No Problem,” a dance party like nothing else on the planet.
Thanks for watching, and for your lovely messages of support throughout this conference. It means the world to me. And now, let the anticipation begin for AIDS2018 in Amsterdam.
Amsterdam, y’all. Can you imagine?
Tags: advocacy, Aging, aids, barebacking, conferences, criminalization, culture, gay, gratitude, help others, hiv, meth, physical, physician, politics, PrEP, recovery, Recreation, research, serosorting, Sexuality, stigma, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Monday, July 18th, 2016
(UPDATE: See all of my video blogs from AIDS2016 right here.)
Conference coverage might just be the most enjoyable aspect of blogging for me. There’s nothing like capturing a protest breaking out, or the emotions of advocates from struggling countries, or a drag queen on stilts handing out condoms. I’ve never met an eye-boggling sight that I didn’t love – and put on camera.
My coverage of the international AIDS conference (AIDS2016) in Durban, South Africa is happening right now. I am in Durban, scurrying about the conference with other advocates from around the globe, and my primary purpose is to give you the feeling that you are right there at my side.
My AIDS2016 coverage is sponsored by MSMGF.org.
This year I am proud to be sponsored by The Global Forum of MSM and HIV (MSMGF). My coverage can be viewed on the site that birthed my own blog, TheBody.com, and at MSMGF.org. Queerty will step also step in and feature at least one of my video reports.
My coverage can also be viewed right here on TheBody.com.
My Australian camera man Theo Tsipiras and I will capture the human stories that make the conference so compelling. That isn’t to say we won’t include breaking stories about research. I have no problem rushing a scientist and getting him to explain the latest news to me. I just want to be sure he does it in a way that makes sense to everyone back home.
I will admit to it being exhausting. We’re filming morning to evening every day, and then I’m editing footage all night to produce the video for the day. It’s a diet of pure adrenaline. But how can I not do this? What a joy and a privilege it is for me to be active and engaged, after so many years, and bringing these people and their stories to life.
Thanks for checking out my video coverage at the links above, and please be well.
Tags: advocacy, aids, conferences, criminalization, culture, gay, help others, hiv, physical, physician, politics, PrEP, research, serosorting, Sexuality, stigma, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 1 Comment »
Tuesday, June 7th, 2016
There’s more room in a broken heart.
— Carly Simon, “Coming Around Again”
What he will not have is a pulse.
Will, a 44-year-old living in Atlanta, is having a Left Ventricular Assist Device (LVAD) implanted, and it will push the blood flow through his heart so smoothly that the throb of a pulse will be virtually nonexistent. Unlike a pacemaker, the LVAD needs electricity to function, provided by a battery pack to be carried by Will at all times. With an extra battery always on hand. And a couple more charging at home.
The last year may have been devastating for Will, but the process has had an unexpected effect on his emotional state.
“I’m happier than I was before I got sick,” Will says now. Allowing himself to receive the love and support of his wide circle of friends has had an enormous impact. “A lot of people will never know that kind of love while they are alive,” Will says. “To be able to know that is an incredible gift.”
The bearded weight-lifter has always cut an imposing figure, and he admits he used his physicality as armor while navigating life as a gay man. “I had to project this image,” Will says. “It was such a fraud.” His intimidating posture kept people at a distance, even as he struggled with life events that called out desperately for support.
Will tested HIV positive twenty years ago. Coming to terms with the stigma attached to the virus is something he managed to resolve some time ago, until he found himself facing another disease that posed a more immediate threat: crystal meth addiction.
Once he began a recovery program for meth addicts, populated largely by other gay men, Will was surprised to learn how many of his fellow addicts were also HIV positive but uncomfortable saying so. “That surprised me,” he says, “that people could feel stigmatized for their HIV, even among other gay people in recovery.” Will responded by becoming one of the founders of Pozitively Fabulous, an annual retreat weekend for people in recovery living with HIV, now in its fifth year.
As his years of successful recovery passed, however, Will continued to hold tight to his ultra-masculine persona. His social media pages were littered with gym selfies and bicep measurements. It was an unhealthy fixation on self, Will now admits, and it eventually caught up with him.
In May of 2015, after seven years of clean living, Will relapsed on meth for two full weeks.
“I ended up in the emergency room,” he says. “I thought I was having panic attacks, but I was in kidney failure. I was in total disbelief when they diagnosed my heart failure. I’ve never even had high blood pressure.”
“It could have been anything, HIV, diet pills, steroids, crystal meth, genetics,” Will says. But he knows that, when it comes to addiction, the most obvious answer is usually the right one. “People will sometimes say how ironic it is that I ‘escaped drug addiction’ and then this happened. No. I didn’t escape drug addiction. This is what happened.”
What has followed is a year of medical trial and error, as doctors tried to keep Will’s heart viable while exploring alternatives. He has been denied a heart transplant due to HIV, and his doctors say there are no heart transplants happening in the United States for people with HIV, anyway (the very few organ transplants that are happening, such as liver transplants, are between HIV positive patients and donors).
“I went through a couple months where I didn’t want to live anymore, I was suicidal,” Will says. “I didn’t want to be here anymore.”
Addie is the pit bull that is glued to Will’s side, constantly vigilant for a hug from him or signs of a treat or a walk. “Addie is the reason I’m still here. I live alone, I’m single, I didn’t have a boyfriend or the fabulous life I thought I would have. But Addie forced me to get up every day and take her out. She’s the reason I stuck around.”
“When I met her at the dog rescue two years ago, they told me she was hard to adopt because she was high strung and not great around kids or dogs.” Being a pit bull probably didn’t help her chances, either.
It was a match made in shelter heaven. Both Will and Addie might have been outwardly intimidating to others, but what they really needed was some unconditional love. “I connected with her and fell in love,” said Will. “When I’m with her, I try to be as happy as she is. She is always right here in the moment, and she believes everything will be okay. She adores me. I’ve never had this type of relationship with anything.”
Will has a team of friends at the ready as he mentally prepares for the five-hour LVAD surgery in a few days, but he wants them to be focused on Addie, who will miss him terribly. “She is too big and hyper to sneak into the hospital to see me,” Will said, “but I’ll be doing video calls with her.”
Will has watched YouTube videos of the surgery (“gruesome stuff”) and knows the risks of complications. He understands the LVAD will probably be attached to him for the rest of his life (“batteries are important, but I can plug myself in anywhere, including the car”). Whatever anxiety Will may be experiencing is blanketed by a deep sense of gratitude.
“Today, I look at situations that really should aggravate me, and I’m just not there. All that shit I thought you should think about me doesn’t matter. Things like money and romance aren’t important to me now, or being super macho so people don’t think I have feelings. What is important to me are things I already have.”
“My biggest challenges have been readjusting my expectations,” Will adds. “Sure, I have a lot of uncertainty in my life, but I’ve got so much love the last year from my friends and family. And you know what? I allow people to love me. They want to be helpful, and the biggest thing I can do for them is let them love me.”
As Will considers his close brush with mortality this year and the recovery process ahead, he sounds like a man who is comfortable, at long last, in his own skin.
“I’m grateful I have been given a year to resolve things, let things go, take care of things,” Will says. “If I were to leave this planet, I would be okay with that. I’m okay if it’s my time.” His affairs are in order, including a new home for his beloved Addie, just in case.
“All that said,” Will offers finally, “I don’t want to go.”
(UPDATE: Great news! Will Armstrong’s friends had created a GoFundMe page to help him with basic living expenses, but after successful LVAD surgery and a robust recovery, Will is walking the dog and taking on small work projects. The GoFundMe project has ended, but Will sincerely thanks everyone who has carried him through this time. “I plan on ‘paying it forward’ for a very long time,” Will said.)
Tags: advocacy, Aging, gay, gratitude, help others, hiv, meth, physical, physician, recovery, Recreation, Sexuality, stigma
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 2 Comments »
Monday, June 6th, 2016
My friend Olivia G. Ford (she got that whole middle initial thing from me, I’m convinced of it) speaks even faster than I do. That’s a rare distinction.
Olivia is also an editor. She was my editor during her years at TheBody.com. I am afraid of editors. They know too much. They might even know I’m not the writer people think I am. Not on the first draft, anyway.
A few months ago, Olivia invited me to join her as the guest editors of a special issue of Positively Aware magazine and the result, “Our Golden Years,” explores aging and HIV from the viewpoint of people who are already post-retirement age. (Check out the link to read a digital version, or find a copy at your local HIV clinic or pharmacy.)
In our initial conversations about how to approach the topic of HIV and aging – and let’s face it, we’ve all been seeing it in HIV media a lot in recent years – we hit upon the fact that, while there are so many people post-retirement age who are living with HIV, most stories on HIV and aging tend to focus on “the AIDS generation” preparing to age, rather than those who are already experiencing their advanced years right now.
From our editor’s letter in the issue:
We believe that the story of aging and HIV must include people who were in their 30s and beyond when the epidemic began, as well as the newly diagnosed who are already over 50 (who now account for roughly 1 in 6 new HIV cases). Those who have surpassed retirement age have been largely absent from the conversation and media coverage of HIV/AIDS.
The more we considered this, the more we became committed to sharing the stories and lived experience of elder people with HIV for this issue, “Our Golden Years.”
The idea of featuring the lived experience of older people with HIV got us excited, and led to some terrific pieces on mental health (written by two therapists and longtime survivors), a conversation between generations of black gay men, women with HIV post-menopause, how to address the needs of transgender women as they age, and a frank and revealing piece on sex and dating in later years.
We were really fortunate to have such talented HIV writers and advocates join us for this issue, including David Duran, Kenyon Farrow, Sharon Lee, Rae Lewis-Thornton, Kellee Terrell, David Alain Wohl, and David Fawcett. The issue was overseen by the dynamic duo from Positively Aware, editor Jeff Berry and creative director Rick Guasco.
More from our editor’s letter:
So many cultures throughout human civilization have bestowed great honor and value upon their most senior members. We believe it is inherent upon us all, as people who care deeply about a health crisis that impacts us socially as much as medically, to do the same.
Welcome to our golden years.
Being a part of this collaboration with Olivia was truly a delight, and while it may have demystified the role of an editor for me – I’ve never done this before – it absolutely increased my respect for Olivia and her talents, and for all those people out there who are conceiving and shaping HIV publications and web sites on a monthly basis.
So, while I’m at it, a shout-out to the late, great Bonnie Goldman, the founding editor of TheBody.com, where My Fabulous Disease was born. And to JD Davids, the scary smart editor there now. And then there is the sly and brilliant Oriol Gutierrez at POZ Magazine (with the amazing Jennifer Morton, their very own wonder woman), the lovely Bob Leahy at PositiveLite in Canada, and the nurturing and insightful talents of Diane Anderson-Minshall at PLUS Magazine. And Chris Bull at Queerty has been a real advocate for informative and challenging HIV content on their site. Editors, editors everywhere!
But don’t get me wrong. I’m still afraid of them.
p.s. Check out the digital issue of Positively Aware, look for it at your local clinic or pharmacy, or get your own subscription to the print edition right here.
Sunday, June 5th, 2016
The young woman sitting across from me on the bus is in her mid-20s. She turns to her companion and her voice grows serious.
“I know someone who died,” she says in the hushed tone reserved for tales of mortality. Her friend looks up from his phone. “He was a good friend of my brother,” she goes on. “He was killed in a motorcycle accident a few months ago. It was just awful.” As her friend offers words of comfort, my own thoughts produce a rueful smile and a nagging question.
Just one? You know just one person who died?
By the time I was her age, death in my social circle was so commonplace the body count approached the toll of a commercial airline tragedy.
I listen as the woman reverently shares the details of the accident, of the shock waves that surged through the family, of what the dead friend was like and who freaked out at his funeral. And then a bittersweet realization strikes me.
The friend she lost has a story of his very own. It is the chronicle of one tragic death, with all of its intimate details and reverberations. His story will be repeated by the young woman for years, and by her brother and by the remaining loved ones of the absent friend. And they will grieve and remember this individual death and grant it the weight of a rare tragedy.
Already I have indulged in a regrettable pastime that aggravates me when others pander to it. I am counting my lost friends like selfishly guarded chips in a morbid poker game, claiming my grief as if the high tally amplifies the legitimacy of my loss. There is no hierarchy of misery. The death of one person close to you is quite enough.
And yet there are harrowing, undeniable moments from my past, drawn from 30 years living with HIV, that have shaped my attitudes and the senseless tragedies that befall us. I can conjure them but I must do it deliberately, for they are held captive in secluded corners of my mind and I release them with great caution. Perhaps now is the right time to unlock a few of those images.
The fluids in Lesley’s dying body percolating like a coffee maker as we stood at his bedside awaiting his last breath. The anguished admission by my brother, Richard, that he helped his critically ill lover swallow a deadly, Seconal-laced cocktail in order for him to die on his own terms and avoid the final indignities of AIDS. My visit to Pablo in intensive care during his pitiful throes of dementia, nodding my head reassuringly as I tried to decipher his final, incoherent pleas.
They are a litany of despair, these heartrending tales, but I feel compelled to reveal them as part of another common exercise: to authenticate my history as a “long-term survivor.” I have misgivings about that unsettling designation because it doesn’t speak to my other, parallel life experiences and it suggests a dismissal of my relevance in the here and now.
That life has included falling in love, changing careers, teasing my friends, watching my cats wrestle one another, and looking forward to whatever lies ahead with a deep sense of gratitude and joyful anticipation.
And it is this prism—one that includes AIDS as only a segment of my life—through which I view the world today. My status as a long-term HIV survivor does not make me a champion or a museum piece to be examined and admired. I am a man in the prime of his life. My age and maturity guide me, not the virus that has failed miserably to kill me.
The grief-stricken young man I once was held no clue about the mystifying speed with which time passes. The swift interval between the early days of AIDS and merciful treatment breakthroughs confounds me even now. Suddenly I blinked, and when I opened my eyes I was 40 years old and the world was a far different place.
My work in HIV advocacy continued during this time while others retreated to lives away from daily reminders of the epidemic. I did not fault them for that, in fact I envied them, but the army of our earliest activists, forged in the first years of the plague, had diminished.
By then, women and people of color had gained more traction and acknowledgment in the HIV arena, though without the national fervor or the generous support enjoyed by the original, largely gay agencies.
It was a time of such hope and encouraging progress, but if you scratched the surface of these victories you found they were dependent on privilege, money and access. Deaths continued unabated behind a dark curtain of racism and poverty.
The gay community began to avert its eyes from the continued infections of people unlike ourselves, and I joined many other exhausted activists who abandoned town hall forums devoted to HIV for the celebratory relief of the dance floor. Massive circuit party events became a vibrant diversion, summoning revelers by promoting their dubious contributions to AIDS service organizations. After a generation of relentless mortality I felt entitled to the party, to the steroids and the gym membership and the body-thumping beats of house music.
That is, until the festivities morphed into drug-fueled bacchanalias that required ambulances with the same regularity that had once been needed at AIDS hospices. I fell victim to their excesses, and my drug addiction and recovery process removed me from HIV advocacy for the next several years.
They comfort me, these tangible reminders of strife, victory, love and loss. They help me embrace and appreciate my life history. Perhaps I don’t find the title of “long-term survivor” so unsettling after all. There are worse things.
Most of all, the trauma that had once consumed me is now shrouded in the fog of a fading dream.
What remains are the wondrous developments of the present, like treatments that have also rendered people with HIV non-infectious and the amazing potential of pre-exposure prophylaxis (PrEP), a pill to prevent someone from contracting the virus. The advent of PrEP is the most significant prevention advancement in a generation. It is just the kind of miracle we once prayed for as we sat silently in pews at memorial services.
But astoundingly, these developments have been nearly as controversial as they have been celebrated.
There are thoughtful conversations about the cultural and medical effects of PrEP. What a shame they are being drowned out by clanging arguments about who is using condoms and who is not. The ludicrous chatter about who is a whore, a role model or a rebel foolishly reduces human sexual behavior to a problem that must be solved. Much of it seeks to impose sexual sterility in the way homophobic conservatives once denounced all gay bedroom antics, whether they were risky or not.
I remember what sex was like before gay men started using condoms. It was glorious. It still is. I always thought that finding our way back to enjoying sex without a barrier was kind of the point. Even the popular slang for sex without condoms, “barebacking,” evokes some kind of deviant sexual pathology. The entire history of human sexuality would suggest otherwise.
I watch the absurd finger-pointing today, the naïve segregation of positive and negative, the lack of empathy granted to human failings, the tendency of the newly infected to call the police before they call a doctor, the fracturing of the advocacy efforts built over decades, and I weep for the community we once were.
Trying to imprint our life lessons on the young is a fool’s errand practiced without effect for millennia. I have never walked up to anyone who served in Vietnam and asked him to sit down and tell me all about it. I may respect the elderly soldiers in Veterans Day parades, but whatever post-traumatic disorders or multiple losses we may share fail to unite us. I watch them roll by in wheelchairs, festooned with medals and shriveled into nothingness, and then I have the audacity to wonder why younger gay men don’t consider my life experiences relevant.
Our influence as long-term survivors may be limited, but we can find meaning and engagement as cultural elders and mentors. To whatever degree younger people are receptive, we have so much to offer about the nuances of treatment, the various side effects and the failings of the pharmaceutical complex that we have rallied against so effectively through the years.
Regardless, nothing should deter us from being of service to one another. We must support the emerging networks of other survivors and work to find solace in our shared history. We are a displaced segment of a community that once ministered to us. Our bond is vital to finding solutions to the issues we face as an aging population.
As wearying as our battles have been, as unwelcome as we may sometimes feel in the modern advocacy movement, we have plenty to contribute. We had better do it while we still can.
I am sensitive to the passage of time because I have seen lives with great promise left unfulfilled. I may no longer fear dying, but I am sorely afraid of not taking full advantage of these precious additional years that were once unimaginable. Regrets, the things unsaid and undone, are what frighten me and urge me onward.
The mysteries of life and time will be revealed in due course: to the woman on the bus grieving her singular loss, to those who would howl at the moon over behaviors they do not understand, to survivors grappling with the meaning of tragedy, to young people negotiating the sexual terrain, to you and to me and to all the rest.
Enlightenment awaits. All we have to do is blink.
(This essay appeared in the June, 2015 issue of POZ Magazine and is shared with their permission. Today is HIV Long-Term Survivor Awareness Day.)
Tags: advocacy, Aging, aids, barebacking, criminalization, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, PrEP, recovery, Recreation, research, serosorting, Sexuality, stigma, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Thursday, June 2nd, 2016
The issues of race, gender and privilege crackled through the recent HIV Is Not A Crime (II) conference like a live wire, throwing sparks at every turn. From the main stage to the hallways, attendees called out white classism, the utter failure of the criminal justice system (unless its purpose is solely to imprison black men), and what it truly means to be an ally of marginalized communities.
It was at turns exhilarating and a little unnerving. White male advocates like myself might have lost our bearings from time to time, wondering why we felt self-conscious at a conference devoted to an issue we care deeply about. No matter. The anti-criminalization movement is largely populated by women and people of color, and their job isn’t to make me comfortable (activism rarely is). Changing laws that imprison innocent people living with HIV is the goal, along with condemning the social and legal systems responsible.
If you go with that thesis, then the prominence of women and people of color at HIV Is Not A Crime is as bittersweet as it is triumphant.
Produced by The Sero Project and the activism powerhouse Positive Women’s Network USA, the conference served as a “training academy” for advocates working to reform or repeal State-wide HIV criminalization statutes, and the work of organizers is a testament to our common bond: the empowerment of people living with HIV, speaking about ourselves, for ourselves.
The intersections of race, gender, and sexuality were given as much weight as strategy sessions on working with legislators and lawyers, and the program repeatedly drove home the fact that criminalizing behaviors related to specific groups of people is as American as apple pie. Plenary speakers included advocates for women (including transgender women), current and former sex workers, immigration reform and drug legalization advocates, and, most powerfully, people who have been prosecuted under HIV criminalization statutes.
My video coverage of the HIV Is Not A Crime (II) Training Academy provides a glimpse of demographic landscape the conference offered, even if I managed to chronicle remarks by elevated HIV advocate Mary Fisher while not capturing enough of the electrifying words of grassroots activists like Maxx Boykin, Ashton P. Woods, and Marco Castro-Bojorquez, or criminalization survivors like Ken Pinkela and Monique Moree (add them to your Twitter feed anyway). My special thanks to Nicholas Feustel, a Berlin filmmaker who is creating his own film about the conference, for allowing me to tag along during his interviews (and take advantage of his awesome lighting).
It is tough to describe the experience of being on the campus of University of Alabama in Huntsville with these fierce advocates for four days, living together in dorms and taking our meals in the cafeteria. HIV Is Not A Crime may be the most perk-free conference any of us have ever experienced, with no exhibit hall or pharmaceutical sponsors bearing swag bags, and I don’t believe we would have it any other way.
For more information on HIV criminalization, and why this continues to be the defining moral HIV issue of our time, I urge you to visit The Sero Project for video interviews with those who have been prosecuted and a state-by-state map of HIV statutes.
Meanwhile, my friends, please be well.
p.s. Speaking of conference coverage, I’m thrilled to announce that I will return to the International AIDS Conference for AIDS2016 in Durban, South Africa in July. My video blog coverage is sponsored by MSMGF and will appear on their site as well as TheBody.com. I look forward to bringing you the sights, sounds, breaking news, and most especially the people that make the bi-annual conference so memorable. Look for more details very soon.
Tags: advocacy, aids, barebacking, conferences, criminalization, gay, hiv, physical, politics, PrEP, serosorting, Sexuality, stigma, testing
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 1 Comment »
Wednesday, April 27th, 2016
The college student had real concern in his eyes when he asked me a question during a recent presentation at American University. “Isn’t it true,” he asked, “that the HIV epidemic continues because people who know they are positive keep infecting other people?”
It is a question I have heard before, in one way or another, and it always makes me cringe. Not only does it thrust all culpability onto those living with HIV, it also promotes a narrative that being infected with HIV chemically changes our moral fiber and transforms us into abusive monsters. It is the kind of characterization that is driving HIV criminalization laws and prosecutions, which are jailing people with HIV for the offense of having sex at all, even when we protect our partners.
“That is simply wrong,” I responded to the student. “In fact, the largest amount of new infections is due to people who don’t know they are positive, who are operating on outdated HIV test results, or who haven’t tested at all. They are having sex while the HIV virus is raging in their bodies. They are the more dangerous group.”
There are few things more satisfying than projecting blame onto other people, especially when you can sling it across the chasm that exists between those who of us who actually know we are HIV positive and those who do not. There is such comfort in pointing out that nope, it isn’t me, it’s that guy over there.
And shouldn’t people know that those who haven’t bothered to get tested lately are responsible for more infections? It’s a message advocates like myself have been delivering for years in an attempt to increase HIV testing and, consciously or not, subtly redirect blame.
Except that my answer to that college student isn’t true. Not anymore. New epidemiological facts, first brought to my attention last month by Paul Kawata of the National Minority AIDS Council (NMAC), completely discredit my long-held beliefs.
More new HIV infections are now caused by people who know they are positive. That’s the truth. And by a wide margin.
Here comes two brief paragraphs of wonky epidemiology. Hang in there. It’s very interesting.
A December, 2015, article in the New England Journal of Medicine (NEJM) using data from 2012 shows that a whopping 69% of new infections can be attributed to people who have already tested positive for HIV but are not in care or not receiving adequate care, and only 23% of new HIV infections are due to those who do not know they are positive (a small, single-digit percentage of new infections are attributable to people who are in regular care but are not necessarily undetectable).
This, in contrast to a study published earlier last year in the Journal of the American Medical Association (JAMA) but using data from 2009, which states that people who know they are positive are less likely to transmit HIV than those who don’t know they are positive.
So, what happened between 2009 and 2012 that produced such conflicting results? Dr. Jonathan Mermin, the Director of the National Center for HIV/AIDS at the Centers for Disease Control (CDC), happens to have co-authored both studies in question.
“Saying the epidemic is largely driven by people who think they are negative is no longer a true statement,” Dr. Mermin told me. “And this is what has changed over time: The United States is one of the countries where a high percentage of people know their status. We’re up to 87%.”
In other words, there is now a much larger pool of people who know they are positive, due to the success of HIV testing efforts. And from this larger pool comes the vast majority of new HIV infections.
“The reason these figures have changed,” said Dr. Mermin, “is because we know more of the people who are positive. The challenge now is to get those people into regular care.”
Since only 30% of those who know they are positive are virally suppressed – a number that has nevertheless grown in recent years – Dr. Mermin strongly believes that the biggest push both clinically and in terms of CDC budget dollars should be devoted to getting people with HIV into care, on treatment, and rendered undetectable (also known as “treatment as prevention”).
“Treatment and prevention are now intertwined” said Dr. Mermin. “You can’t think of one without the other. We have encouraged our grantees to think about that continuum of care, to think about getting people into care, anti-retroviral therapy, while continuing to help people know the facts about transmission. That comprehensive package has been found to be effective.”
The clear evidence after all of this number crunching makes my longstanding habit of assigning blame to “those other people” not only ignorant but ludicrous. There are plenty of HIV infections to go around. This isn’t a contest for the title of Most Likely to Infect Someone.
Funny how my attitude becomes more generous, when it is now people who know they have HIV, like me, who are doing the most infecting.
We also can’t ignore another important statistic. Only 30% of the HIV positive people in the United States are undetectable, which puts an asterisk on another popular message among HIV advocates: that it is safer to have sex with a person who is positive, in treatment, and undetectable.
That is literally true, yes, but it includes a big mouthful of important qualifiers – not all of which can be properly vetted in every risky situation. Hopeful assumptions are not a prevention strategy.
While I applaud the gay dating apps that have added profile options for HIV status that include “undetectable” and “PrEP,” the truth behind these personal factoids should be weighed at least as discerningly as facts presented about, say, their age. Or about their other personal attributes. Ahem.
The growing list of status labels also fractures our community even further, whittling us into subsets within subsets. Suddenly, the new personal failure isn’t simply being HIV positive, but now includes not being undetectable. This doesn’t begin to address the many social determinants that block people who know they are positive from achieving viral suppression: lack of access and financial resources, HIV stigma, an unwillingness to take medications, having failed treatment regimens, or simply being without the wherewithal to locate an HIV clinic or physician and jump through the hoops required to enter the system.
All of the finger pointing in which I have admittedly participated is a useless exercise. By focusing on the relative safety of someone else we renounce our own responsibility. That is why the arrival of pre-exposure prophylaxis changes so much of the game. PrEP puts HIV negative people in charge of their own protection, without having to make judgments or assumptions about others.
But, until PrEP access and education better reaches communities most at risk, many people will still look outward, relying on guesswork and presumptions about who is a danger to them and who is not. As I have recently learned, sometimes we get it very wrong.
It took surprising new research on current HIV infection rates to get me off my high horse and take me back to basics. We’re all in this together. Negative people at risk should maintain HIV testing. Those who test positive should investigate treatment. Barriers should be removed.
And of course, taking action to protect ourselves is our responsibility. It is ultimately ours, and ours alone.
And, under the banner of “Why Mark Avoids Writing Research-Based Essays,” this counterpoint from the always insightful Londoner Gus Cairns, editor of AIDSmap. Gus references an AIDSmap article, “Model suggests there are fewer people with HIV in the US than thought, and more of them on therapy,” which reads in part:
A study comparing recorded diagnoses of HIV with subsequent records of viral load and CD4 tests suggests that the number of people with HIV in the US could have been overestimated by as much as 45% – and the proportion who are on antiretroviral therapy (ART) with undetectable viral loads could have been underestimated by as much as 50%. There could be a few as 820,000 people with HIV in the US compared with the normally accepted figure of 1.2 million – and up to 55% of those could be on ART and virally suppressed, compared with the most commonly quoted figure of 30%.
The first-ever HIV IS NOT A CRIME conference held last year in Grinnell, Iowa, was the most inspiring conference I have attended in years. Advocates of every stripe were laser-focused on what I consider to be the defining moral issue of our time in the HIV arena.
And now, the second conference is about to be held, this time as the “HIV Is Not A Crime Training Academy,” on May 17-20 in Huntsville, Alabama. You gotta love how these committed advocates choose locations to meet where criminalization is either being successfully reformed (Iowa) or where prosecutions continue (the south). I recommend you attend if you possibly can, or at least follow the event’s Facebook page or the #HIVisNotACrime hashtag on social media. If you would like to promote criminalization reform, check out their handy social media toolkit for sample tweets and fabulous artwork.
Tags: advocacy, criminalization, culture, gay, hiv, physical, physician, PrEP, research, serosorting, Sexuality, stigma, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 2 Comments »