Posts Tagged ‘hiv’
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“In fact, the largest amount of new infections is due to people who don’t know they are positive, who are operating on outdated HIV test results, or who haven’t tested at all.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 | 1 Comment »
Monday, April 18th, 2016
When Sadiq Ali heard about a clinical trial for pre-exposure prophylaxis (PrEP) happening in the United Kingdom in 2013, the athletic 26-year old hesitated. He worried about what starting PrEP might say to people about his sexual behavior. The stigma he associated with being on the prevention pill was just too much for him.
“I was ashamed to even be offered this thing, even though I barely knew what it was,” the Londoner says now. “I thought that only highly promiscuous and risky sex practitioners would take this. I went through this process of ‘slut shaming’ myself. I was still very naïve at this point.”
So, Sadiq waited a few more months, had second thoughts, and decided to enroll in the PrEP study after all. Unfortunately, fate had dealt him a crushing blow.
Between the time Sadiq heard about the study and before he actually began taking PrEP, he was infected with HIV. It occurred literally days before he started taking the pill. His first HIV test during the study, in January of 2014, revealed the infection.
“I thought if I took PrEP it would make me all the things I didn’t think were me. Things that I didn’t want to be,” he says, pointing to the promiscuity about which many gay men taking PrEP are accused. “But instead, not taking it resulted in me contracting HIV.”
The irony of Sadiq’s tragic timing forged an advocate who is fighting both HIV stigma and for the adoption of PrEP in the United Kingdom (it is an advocacy issue that was further ignited when the UK National Health Services took action that has delayed the approval of Truvada as PrEP, perhaps for years).
This past year, Sadiq won the title of Mr. Gay Great Britain, and his advocacy platform is something he now understands all too well: HIV stigma among gay men, and why PrEP is such an important new prevention tool.
In his emotional and inspiring video as a contestant for Mr Gay World – the finals are happening this week on the island of Malta — Sadiq courageously shares his story of deciding to join the PrEP trial too late, and what the experience has taught him about internalized stigma.
“Something was lifted from my shoulders when I filmed the video,” Sadiq says. “I can now be in a position to educate.”
British PrEP advocate and gay internet personality Greg Owen understands just how frustrating the unfortunate timing of Sadiq’s HIV diagnosis was. Greg, too, was infected with HIV just as he was to begin participating in a PrEP trial. The two men – one a longtime advocate, the other a newly minted one – filmed an interview for #GregChats that is as good-natured as it is emotional.
As for Sadiq’s week ahead in Malta, he intends to showcase both his advocacy and his eye-popping skill as a gymnast and circus performer. Anyone in the world can vote for Sadiq right here.
“The community support I’m receiving behind me is swelling up” he says. “I am more motivated than I have ever been and I feel proud. I know that I am doing the right thing. I want to tell people that there is a way to protect yourself, and there is no need to judge yourself for that. To take your status into your own hands is something empowering.”
He also has no preconceived expectations about his chances to take home the title of Mr. Gay World. Winning is beside the point, Sadiq believes.
“Of course,” he says, “I have already won.”
Tags: advocacy, culture, gay, gratitude, help others, hiv, PrEP, Recreation, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 1 Comment »
Tuesday, April 12th, 2016
Stigma is insidiously quiet. It is conjured in the mind, born of discomfort and fear, and then it is projected at “the other” among us. It judges them and isolates them. And it happens without a sound.
Stigma lets us take comfort in seeing things in others about which, we believe, they must be ashamed. It is a lazy way to feel better about ourselves—and therefore a popular human activity—and gay men are remarkably good at it. So many of us survive childhood taunts that by the time we come of age we have developed fairly lethal claws of our own. We know how to hurt others before they can hurt us.
But when the AIDS pandemic began over 30 years ago, gay men learned that whatever cleverness we possessed was no match for a crisis that questioned nothing less than our existence on this earth. Churches said we were damned. Politicians wanted us quarantined.
Gay men prefer to remember the earliest days of AIDS as a heroic time, and there is no doubt that many of us behaved that way, but stigma also was a fearsome, daily aspect of our lives in the early 1980s. Heterosexual parents were not the only people disowning someone with an AIDS diagnosis. Gay men also were driven by ignorance and fear. We kicked out our sick roommates. We refused to give them manicures or cut their hair. We turned away from their sunken faces at the neighborhood bar, when they had the guts to show up at all.
Once the initial hysteria subsided and the virus and its routes of transmission were identified, stigma between gay men calmed somewhat, if only because there was so much work to be done to care for the dying. Our brothers with AIDS were not so much stigmatized as pitied for their loss of dignity and humiliating deaths. They were tragic victims, exalted as martyrs.
Until they weren’t. With the advent of breakthrough treatment in 1996, the dying nearly stopped in its tracks. Patients got up from their deathbeds and rejoined the living. There were cheers all around. Within a few years, even the word “AIDS” had nearly disappeared from the gay lexicon.
Those former patients, and the many gay men with HIV to come after them, had no interest in playing tragedy, or in being wizened and terminal and predictable. They wanted to take their rightful places in our social scene, to date and fall in love, to enjoy the bars and the clubs and the house parties. They wanted to laugh and dance and live.
And that is when, in the deviously quiet way in which stigma operates, all hell broke loose. We built social fortresses to separate Us from Them. We didn’t have to bother labeling one another because the disease did it for us, creating an HIV hierarchy that started with “positive” and “negative.”
The more HIV treatments improved, the wider the viral divide became. Our mutual resentments and jealousies worsened. As the physical scars of AIDS faded—the skin lesions, the wasted faces—our anxiety level rose as HIV status became less apparent. You can just imagine the frustration of the discerning gay man, no longer capable of telling the positive from the negative. Where’s the comfort of stigmatizing someone when you can’t tell who they are?
Today, our attitudes about HIV and other gay men range from self-righteousness to outright contempt. From whatever our vantage point, we have shamed and stigmatized everyone else into a corner, and the result is a community in revolt against itself. We are a snake eating its tail.
It might be easy to doubt this gloomy view of the gay community. None of us like to believe ourselves guilty of treating “the other” badly. The only thing we admit for sure is that we have been mistreated and misunderstood. Our self-interest is telling.
Maybe the problem is that, beyond the convenient anonymity of online hookup sites or mobile apps, you don’t usually see HIV stigma in all of its black-and-white ugliness. You don’t hear its voice.
Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy.
We might make motions to comfort them, but it is the kind of patronizing back-patting that we reserve for the truly stupid. We tell them they will be fine, really, and we don’t look them in the eyes for very long. Our weary judgment shows.
Never mind that they are guilty of nothing more than being human, of being in love or getting drunk or trusting the wrong person or saying yes when they should have said no. Their weak excuses will be met with furrowed brows, and their dating life will wither. They will be marked and socially downgraded. They should be ashamed, and something inside us hopes that they are.
Do you hear it? Keep listening. There is so much more to say.
Before long, those newly diagnosed will join the promiscuous ranks of sexually active HIV-positive men. They are the unclean ones, the barebackers trolling the Internet, the murderers with tainted blood on their hands, the crystal meth addicts lounging in bathhouses with the door ajar. They are the unrepentant, the whores, the vile merchants of death.
Never mind that these men struggle to disclose their status, that they are routinely rejected socially and sexually, that their waning self-esteem is being strangled by our judgment, that sometimes their lives feel so forsaken they settle on whatever community will have them. The fact that stigma and depression often lead to escapist behavior is of no interest to us. We fear they could be having more sex than we are—hotter sex maybe—and the chance it might not be hurting anyone is infuriating. They should be ashamed, and we will make damn sure that they are.
The lowest rung of the gay HIV hierarchy is inhabited by older gay men who have lived with the virus for decades. They are the dependent ones, the sunken-faced humpbacks cashing their disability checks and wiling away their days sipping coffee in Café Disabilité. They are the aging invisibles and the sexually worthless.
They try to mask their feeble wasting with testosterone injections and protein shakes and facial fillers, but we know the truth. We see. They remind us of our darkest days, these unwelcome relics, and though we ignore them their haunting persists, in the daylight of the grocery store and the darkness of the bars. We avert our eyes and anticipate their extinction.
Never mind that they were among our earliest activists, our courageous long-term survivors, the men who scrawled words like “empowerment” and “advocacy” across the bureaucracies of their time. Forget that they have seen death in obscene quantity, that whatever joy they possess is a triumph of spirit. They should be ashamed, but we don’t regard them with enough interest to care.
Do the words sound familiar at all? Do you hear the voice? It isn’t nearly done.
Take a hard look at HIV-negative gay men. They are the superior ones, the corrupt morality police, the hypocrites, the gentlemen in waiting. Above all else they are the supremely lucky, because they can’t possibly live by the crushing code of conduct they impose on the rest of us.
They reject us as damaged goods. They promote how “drug and disease free” they are. They publicly advertise their outdated HIV results. They tell us we would make better friends than sex partners and then they don’t call again. They find clean, disease-free love with other, similarly superior men so they might have a life out of reach of the great unwashed.
Never mind that they have successfully avoided infection thus far, that they have buried friends and comforted lovers, that they withstand the unnerving ritual of HIV testing and worry about whether or not they will pass or fail. And please, pay no attention to the fact that they fear HIV stigma at least as much as positive men do, which is one compelling reason they hold tight to their negative status with such fervor.
None of their circumstances can excuse their indictment of the rest of us. We marvel at their lack of shame, and wonder bitterly if their attitudes might change if they became infected.
At least they don’t suffer the same wrath as do HIV-negative men taking Truvada, the HIV medication used as a pre-exposure prophylaxis, or PrEP. They are the traitorous ones, thumbing their noses at their elevated negative status by intentionally dipping themselves in the viral soup of casual sex. They are obviously barebacking infected guys or they wouldn’t be popping pills that blunt the consequences of being a poz-loving slut.
And God help those who don’t admit they are infected and have sex with a negative person, because they are the criminal ones, the terrorists, the dangerous liars who must pay dearly for what they’ve done. They belong in jail and off the streets, like drug dealers and rapists.
Never mind that, for reasons we all well know, they can’t always bring themselves to disclose, that they may use condoms, that they may be adherent to their meds and undetectable, and that no single case of an undetectable person transmitting the virus has ever been verified. Disregard the fact that conservative lawmakers and prosecutors are more than happy to exploit our thirst for vengeance and lock up some diseased fags who dare to have sex at all. Forget that during the first years of AIDS, when the virus reliably killed you, those who became infected took personal responsibility and called their doctors to start treatment and not the police to press charges.
That is the sound of stigma. It is bitter and rageful and terribly afraid. I can hear my own tones in it, like a voice in a chorus, when it says the words I would never admit to thinking. Do you hear your own?
Gay men have known since the AIDS pandemic began that empowerment is the antidote to stigma, that the more proactively we approach our health care and build support networks, the less stigmatized we feel. The answer lies in our refusal to be marked and shamed. But our own community challenges us at every turn.
Stigma operates exactly like the deadly virus we claim to oppose: It infects pieces of us and then turns those factions against the rest, until the entire body is weakened and vulnerable. We all know how that process ends.
That is what the gay community has become. We are AIDS itself.
When HIV disease is over—and some day it surely will be—our jubilation will be beyond all imagining. We will have finally put an end to the health crisis that has plagued us for generations, a crisis that polarized nearly everyone, most particularly us as gay men. And once the celebrations fade, another equally important moment will come.
We will take a look around at our friends and lovers on both sides of the viral divide—at all of our brothers whom we stigmatized for one reason or another—and our old judgments will be transformed to a deep regret. Hopefully, in that moment, a certain kind of grace will emerge. We will clearly see the deep, private wounds of HIV stigma, and we will finally allow that we are all simply and imperfectly human. And then everyone will have some explaining to do.
It wouldn’t be too soon for that moment to happen now.
(This article originally appeared as a cover story in the June, 2013 issue of POZ Magazine but has never been posted on my blog until now. It remains one of my proudest moments as a writer. You can view my remarks about writing this piece, presented at the 2013 International Conference on Stigma, here. Photos: Jonathan Timmes Photography.)
Tags: advocacy, Aging, aids, barebacking, culture, family, gay, gratitude, help others, hiv, physical, physician, politics, PrEP, recovery, Recreation, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 4 Comments »
Friday, April 8th, 2016
In a bizarre press release issued by AIDS Healthcare Foundation (AHF), the $1 billion dollar agency has offered “no interest loans” to assist Baton Rouge HIV non-profits who are suffering financially as a result of being sued by AHF. Yes, their circular logic is exactly that absurd.
AHF is like a wife beater who offers the victim a few bucks for makeup to cover the bruises.
The fantastically weird offer comes in response to a thundering public outcry after it was revealed that AHF, dissatisfied with their Ryan White Care Act funding in Baton Rouge, filed suit against the city and parish of Baton Rouge as well as the local non-profits agencies who also received funding – even though those agencies play no role in the disbursement of funding and are without resources to defend themselves.
AHF is “dismayed,” according to their release, that as a direct result of their lawsuit, the City of Baton Rouge chose not to execute funding contracts that would have gone into effect on March 1st, while waiting for an initial hearing to be scheduled. Services provided by local agencies since March 1st have gone without reimbursement, placing a financial strain on the agencies and risking service provision to people with HIV.
Kim Hood, Chief Operations and Compliance Officer at the HIV/AIDS Alliance for Region Two (HAART), one of the local agencies being sued, isn’t buying the loan offer for one second. “If AHF is in such a fantastic financial position to be so magnanimous as to offer loans to agencies that have been doing this work for more than 20 years,” she said, “then they don’t need Ryan White funding.”
“They have no intention of making any loans,” Hood continues. “I fail to see the purpose. If they loan me the entire amount I am supposed to get from Ryan White, how am I supposed to pay it back if they are successful in their lawsuit, which would take away funding from us?” Hood says that, rather than devoting time to managing care for HAART clients, “I have been spending my day drafting a response to a temporary restraining order filed by AHF. Their claims are laughable.”
Reached by phone for comment, AHF Director of Communications Ged Kenslea was not able to provide further information on the proposed loans, saying only that “we are in that process now.” When asked why, if AHF was concerned about the financial hardship of the local non-profits, they didn’t simply remove those agencies from their legal proceedings, Kenslea said it was a “legal question” and referred it to AHF’s legal counsel, who was unavailable for comment.
“We are attempting to hold the parish accountable for an inequitable process,” Kenslea managed to say before abruptly ending the call.
Hood vehemently disagrees with that assessment, or that the parish “abused its authority when awarding contracts,” as claimed by the AHF press release.
“We don’t always agree with the monies allocated,” Hood said. “But we trust the entities who are charged with making these decisions, because they have the most information about where the need is. We don’t sue the city.”
Hood believes that AHF has far greedier motives for its actions. “This is not about patient care,” she said, “this is about the 340b drug pricing program. An AIDS organization that is providing medications that encourage viral suppression is eligible for this program. The program offers a substantial profit on these medications. AHF didn’t get funded in the category that would have benefited them most from this program. It’s very lucrative.”
Hood further believes that AHF has shown no regard for the local Ryan White process, which typically awards smaller amounts to first-time grant requests, and then increases those awards as the agencies demonstrate they are good stewards of the funding. “The service organizations in this market have been good stewards of those dollars for more than 20 years, working together and being good partners with one another. AHF has not been a good partner, either in this market or in any other market I am aware of.”
“Every local agency named in the AHF lawsuit works together and makes referrals to one another. It creates a continuum of care. The city and parish know these things, and take them into consideration.”
“Just because AHF has come into this marketplace and bought up HIV practices to create a large patient population does not mean they are entitled to this funding, over those of us who have been doing this work for years” says Hood. “I find that offensive.”
Hood bemoans the fact that AHF dragged her agency and others into their legal wranglings. “They didn’t have to name all the other recipients. They don’t want us spending any of the money they think they’re going to get their hands on.”
AHF presumably remains dismayed. Dismayed, I tell you.
Wednesday, April 6th, 2016
In a profoundly troubling lawsuit against the City of Baton Rouge and local HIV/AIDS non-profits, the AIDS Healthcare Foundation (AHF) has forced federal funds to be withheld while AHF continues their litigious temper tantrum over not receiving a Ryan White Care Act grant award they requested. The vindictive action poses a real and present danger to services being provided to people with HIV in the area.
AHF, also known as The Walmart of AIDS, did not simply sue the city of Baton Rouge (the government entity responsible for the grant process). In an insanely destructive move, AHF also included in their litigation the local non-profit agencies that received funding — even though those agencies play no role in grant disbursement (read the nauseating lawsuit here).
As a result of this intimidating legal stunt, the city has voluntarily paused their contract process until a hearing can be held (contracts to agencies were due to be executed on March 1st). That means local grantees are not able to seek reimbursement for services they are providing right now to people living with HIV.
AHF, with an estimated $1 billion annual budget and led by its universally reviled CEO Michael Weinstein, had requested $1 million in Ryan White funding. They were granted $66,000, with the remainder awarded to established local agencies that have been providing services for years. This was the first Ryan White grant request in Baton Rouge by AHF, which crept into the area two years ago after buying an HIV practice and setting up shop with HIV/STD testing services.
“This hurts our clients,” said Matthew Valliere, CEO of Capitol City Family Health Center, one of several local service providers named in the lawsuit. “For AHF to put us as party to their litigation, it is shocking. And it may put a financial strain on our organization.”
That may be exactly what AHF has in mind. The largest provider of HIV services in the world is known for a long and colorful history of suing anything that moves. In one city after another, AHF has entered the marketplace and then either gobbled up local agencies or sued for a bigger piece of the federal funding pie. Just ask the local services providers in Dallas or West Palm Beach, cities which have faced similar AHF action.
In Baton Rouge, funders have had no choice but to withhold the execution of contracts until a hearing can be held on a temporary restraining order request filed by AHF. The hearing may not happen until May and perhaps later. In the meantime, local agencies must hold their breath and hope they will eventually receive their original grant award – while providing services out of their own pocket for as long as they are able.
For Family Health Center head Valliere, that means an average of $40,000 worth of monthly services is not being reimbursed to them as expected. “This is a bullying tactic,” he said. “We will find a way to continue providing services, but I hope it doesn’t go on too long.”
The HIV service agency CrescentCare Health (formerly NO/AIDS Task Force) is based in New Orleans but has a small satellite office in Baton Rouge. Even though they only receive grant monies in Baton Rouge for providing legal services – a service for which AHF did not even apply for funding – the agency has been named in the AHF lawsuit.
“We don’t have funds devoted to defending ourselves against a lawsuit,” said CrescentCare director Noel Twilbeck. “We never expected that we would get sued. Legal fees will have to come from unrestricted funds that would otherwise go to programs like primary medical care.”
Twilbeck said that CrescentCare considered trying to remove itself from the suit, but “we are standing in solidarity with our Baton Rouge friends.” He also finds it “laughable” that the AHF lawsuit contends the behemoth agency is suffering “serious and irreparable damage” because they didn’t receive the funding they requested.
“This is a bully trying to get their way,” Twilbeck said, pointing out that AHF made a reported $15 million in profits in 2012 in the United States alone. “Fortunately, the Baton Rouge agencies are coming together on this, because they view AHF as a predator and a bully.”
The Louisiana AIDS Advocacy Network (LAAN) has released a statement that is harshly critical of the AHF suit while spelling out its potentially chilling effect on people with HIV. “No state funds are available for HIV services,” the statement reads in part, “which make these federal funds vital to the lives of people living with HIV. Delaying these contracts could mean that people living with HIV, especially those without other resources, could miss doses of their medications, not be able to go to medical appointments and not see medical providers. All of these can be potentially life threatening to individuals living with HIV.”
LAAN is urging people to contact Baton Rouge Mayor Kip Holden (email: email@example.com phone: 225-389-3100) to express concern that delaying Ryan White funds will negatively impact people living with HIV.
Baton Rouge has been the victim of an AHF hissy fit before: last year, AHF withdrew its funding support at the last minute for a state-wide HIV advocacy event because one of the committee members is involved in a whistleblower lawsuit against them. AHF reinstated its support after their actions were exposed by My Fabulous Disease. All this nonsense is in addition to AHF’s misleading and discredited opposition to pre-exposure prophylaxis (PrEP).
In other news, AIDS Healthcare Foundation will be opening facilities in Baltimore, Maryland, by the end of this year. Now would be a good time for local agencies to find an attorney that has pro bono availability and a strong stomach.
Monday, April 4th, 2016
When the health of my close friend Ron began to rapidly decline in 1987, he made the decision to leave Los Angeles to return home to rural New York to be near his family. “Just long enough to feel a little better,” he told me at the time. It was a common trajectory in those days, usually undertaken not long after delivering the news to your family that you were gay and oh, by the way, had AIDS.
“Mark?” Ron called from the bedroom. “Did you get a lot of boxes? We’re going to need a lot, I think.” I was in the living room, sealing the music and video carton.
“Yes, Ron. I told you. I’m going to take all this to the mailing place right down the street. They’ll mail it home for you, okay?” I walked into the bedroom.
He sat on the bed, staring at stacks of clothes on the floor around him. They would all be sent along, he had insisted. Clothes for every season. It felt sadly optimistic. His athletic body was shockingly diminished, deflated into near nothingness.
“We need a lot of boxes,” he repeated. “You know what, Mark?”
I took a cardboard garment box that was leaning against a wall and began folding it into place.
“What, Ron?” I grabbed packing tape and sealed the flaps at one end. Ron sat staring at the floor, as if he were napping with his eyes open.
“Hey, Ron, what is it?” I called to him. He didn’t respond.
I knelt by his bed, collecting a stack of clothes, and looked into his face. His features held no expression, except for his eyes, which darted back and forth in a sort of panic.
“Ron? Are you doing okay?” I squeezed his knee. “Ron.”
Don’t you dare have some sort of seizure on me, I thought. That I could not handle, buddy. I felt a flash of anger for agreeing to help him, for having to be the sole remaining companion, the one not driven away by the hospital visits and the disfiguring lesions, the one who had to carry out this depressing task for him. And then, of course, I felt ashamed.
Who said you wouldn’t have to get your hands dirty, Mark? There’s a consequence for inexplicably remaining alive while AIDS punctures your social circle. There’s a certain result from being able to function normally and pack boxes while your friends aren’t so fortunate. There’s a price for your continued good health. And you’re looking at it.
“Ron?” I tried again. “Ron, can you understand me?”
He turned his face to mine. “Of course I understand you, Mark. You think I’m nuts?”
I was startled. “Well no, Ron, but you were – “
“I know everything that’s going on here, Mark!” He stood up a little too quickly, caught his balance, and began to pace around the piles of shirts and underwear. “I know that I am packing things up here, and you are helping me because I can’t fucking bend over without having some kind of stroke. Thank you, by the way. I know that everyone thinks that this is it for me, and that my sister is going to freak out when she sees me.“ He turned to me. “I know that I don’t need my Jane Fonda workout tapes anymore, do I, Mark?”
I couldn’t find words. He shuffled to the sink in the open bathroom. I lowered an armful of clothing into the box.
“There are more towels in here,” he said. “Give them to that old woman next door. Maybe give her this bathroom stuff too, this soap dish and all. She’s old. Maybe she can use this shit.”
His burst of exertion suddenly caught up with him and his body slumped. He held on to the counter top with both hands. I watched his face in the mirror above the sink.
“No, I’m not crazy yet,” he said in a tired voice. He bowed his head, catching his breath.
I couldn’t know what would await him when he made the move home. I had no idea that his panicked parents would soon place my 26-year-old friend in a nursing home, the only available option in his small town, or that Ron’s fate would include losing what was left of his mental faculties in a recreation room filled with the elderly. There was no way for me to predict that the increasingly rare phone calls from his sister would include the fact that if his mother had to witness Ron laying in his own feces one more time the poor woman would go quite mad.
Ron lifted his head and caught my gaze in the mirror. I was wrestling with the muscles in my face to keep from crying. His look suggested that it was he who felt sympathy. For me.
“I have to leave for a while, Ron,” I said. “Lesley went into intensive care this morning and I promised I would get over there to see him.”
Lesley, another close friend of mine, one who Ron didn’t particularly like. And now, the two were competing for the time and affections of our social circle as they raced to their tragic finish.
I stood up and began to gather my things to leave.
“This is just like Lesley,” he said suddenly.
I stopped and looked back at him.
“It figures he’d wanna die now,” he said. “This is just like him.”
Artwork courtesy of Alexander Binder.
(AIDS Dementia Complex [ARD] is associated with late-stage AIDS and was especially common in the United States during the early days of the crisis when there were no effective medications. It is believed to be the result of various factors that include a ruined immune system, medications, and infections such as toxoplasmosis.)
For the very first time on this blog, I am asking for a donation — but not for me, for Moveable Feast, the meal delivery HIV/AIDS agency in Baltimore for whom I am participating in Ride for the Feast, a 140-mile bike ride (!). Would you consider making a donation of any amount? It only takes two minutes, and you can make your tax-deductible contribution on my Ride for the Feast page here. If you have ever found my writing or advocacy helpful, this would be a lovely way to show some love. Thanks, my friends.
Thursday, March 17th, 2016
In the gorgeous and sometimes maddening web series Unsure/Positive, we follow the life of a Boston gay man, Kieran, literally from the moment he gets his HIV positive test result. Kieran’s journey in the six-episode first season (available for only $3.99 on Vimeo) covers some difficult terrain – shame, disclosure, sex and drugs – and many HIV positive guys and our friends will identify with it.
This is poz-adjacent art that is absolutely worth your time and a few bucks, most particularly because it doesn’t beg for your affections. It is messy and sad and hilarious and sometimes impenetrable. Like life.
I must also mention that this series contains a five-minute conversation about crystal meth that might be the best writing on the topic I have ever witnessed on the screen. For anyone with an addiction background or who is trying to understand someone with one, those few moments alone are worth your time.
I spoke with series creator, writer and star Christian Daniel Kiley, and he is every bit as earnest and enthusiastic as one might hope a young new talent might be. We chatted about the show, bad gay movies, John Updike quotes, meth-driven orgies, and the fact something in his show absolutely pissed me off.
First of all, Unsure/Positive is beautiful. It has the production value of network television. I want to challenge you on some of it and we’ll get to that, but there is artistry and a story here that is immediate and compelling. And the emotional payoff in the final episode blew me away.
Mark, stop making me blush! And thank you for saying so. We were very careful to keep the production values high, because we wanted to make something with the potential to go mainstream.
You succeeded. And no need to be modest! You’re doing your thing, Christian.
Part of the reason that the show looks so good is because we threw all the money we raised right at the screen. The downside to that is we didn’t budget in a dedicated publicist. So our show has polish, yes. But at this point we’re reaching only a fraction of our potential audience.
Christian on set during the filming of Unsure/Positive.
You wrote, produced and starred in Unsure/Positive, and I’m assuming the storyline of a newly diagnosed gay man is very close to your personal one. Why was your own story something you felt so strongly about telling?
Well, after I was diagnosed in 2007, I made a choice not to tell anyone about it. My friends were in the dark, my family was in the dark. Where it took (lead character) Kieran three months to come out of the closet, it took me more like three years. I think the post-diagnosis anxiety and depression — once I had recovered from it enough to see it for what it was — was actually the most damaging aspect of testing positive for me.
A writer, maybe John Updike, once said that a writer must believe their life is interesting.
I think Updike also said something like “willingness to risk excess on behalf of one’s obsessions, is what distinguishes artists from entertainers.” Although I actually don’t think that artists and entertainers are mutually exclusive labels.
I’m furiously Googling for more John Updike quotes, as you clearly are doing as we speak, so I give up.
I just found this one: “He skates saucily over great tracts of confessed ignorance.” That’s Updike, referring to another author.
My first grade teacher wrote on my report card that I “skipped nicely to music.” Now I wish she had said I “skipped saucily.” Either way, she had me pegged.
I’m surprised she didn’t say you “skipped gaily.”
Shut up. You don’t know me. Anyway, I have this theory that “gay art” typically sucks. Gay movies are usually not very good, gay plays can be awful, and even gay restaurants have better cruising than cuisine. And we’re supposedly the most creative people in the world! Maybe we become self-conscious or something. Is that fair?
Yeah. I’ve seen a lot of pretty bad stuff in the LGBT section of Netflix. But you have to consider the exceptions, like Tony Kushner. On the other hand, Eating Out is like, worse than Tyler Perry movies. Then you’ve got something like The Outs, a very popular web series that my friend Adam Goldman produced.
I was going to mention Eating Out but I didn’t want to trash anything specifically. God, you’re such a hater.
I’m not a hater, Mark! I swear! I just hate things, like, when appropriate.
Kieran’s best friend and confidant Allie is played by the marvelous actress Amy DePaola.
You mentioned how tough it has been to not only produce Unsure/Positive, but for it to find an audience. Okay, I guess some idiot blogger that says “gay art sucks” doesn’t help very much. But this series absolutely deserves an audience. Where the hell are they?
It’s been a struggle, yeah, to grow our audience. The audience we have so far is very engaged. I get emails and texts every few days from someone new who watches the show and wants to reach out. We make that pretty easy on our website. And that is, without a doubt, awesome. But it’s also a slow burn, and there’s no budget for publicity.
I also have a theory that people, even HIV positive people, see a series about HIV and think “let’s put a pin in that, yeah? We could watch the new John Oliver.” I do that all the time.
Your show shares some creative bandwidth with another web series with a gay HIV positive lead, the musical comedy Merce. The similarities end there. Merce is a low budget romp with enormous heart and silly giggles.
I really love Merce! It’s funny, Merce was released while I was still in post-production for my show, and it sort of took the wind out of my sails when (Merce creator) Charles Sanchez beat me to the punch with an HIV-positive protagonist. I actually asked Charles to consider a crossover — doing a cameo as Merce, out on a date with Kieran. We’re always thinking of ways to expand laugh potential in season two!
Speaking of big laughs, Kieran in Unsure/Positive has a history with the drug crystal meth. Personally, I’m grateful the topic continues to crop up, in books like Lust, Men and Meth, in new actions from ACT UP New York, and Danny Pintauro has been writing about his own meth history. I was a meth train wreck for so long. Its grip on our gay friends is just so heartbreaking and it hasn’t let up at all.
Well, Mark, I must say that I have drawn a fair amount of inspiration from your previous writings about your addiction. I would go as far as to say that, had I not stumbled upon your internet presence back in the day, my show wouldn’t have gotten made in the first place.
Shooting the scene (of men using meth together) was one of the most incredible experiences in my life. I mean, here I am, a former user, explaining to a roomful of actors and crew exactly how meth orgies amongst gay men go down, and finding real catharsis in doing that and maintaining my professional wherewithal. I feel so much more in control of my addiction and recovery after putting myself through those paces.
My sponsor would slap my face and ship me off to rehab if I even considered recreating a meth sex party, even a fictional one.
Well, I certainly understand that. I was never a “heavy” meth user, as I understand it, but I was in deep enough that it ruined a few years of my life. Still, you’d be surprised what confronting your triggers can do to disarm them, at least for someone like me.
Trust me, I don’t need to be testing my triggers, even to disarm them. I’m a true addict, to the bone.
Moments after his test result, Kieran already feels the self-consciousness of the newly diagnosed.
Let me tell you what bothered me before I tell you what infuriated me. I felt like Kieran moped around too long after testing positive. I wanted to slap him. I wanted him to open up to friends. But then, when he finally does, it is so emotional and traumatic for him to admit that I got all choked up. Who the hell wants to admit they just tested HIV positive in 2016? Someone testing positive today is treated like a personal disappointment and a public health failure. So your storyline made me check myself.
I’m glad to hear that the series made you reconsider your original impression of Kieran. I think he’s a character who, for better or worse, is a depressive. It was, for the record, a deliberate choice to make Kieran so ambivalent that an audience would question whether they like him. But (poz activist hottie) Jack Mackenroth, for example, told a friend of mine that he only watched the first couple of episodes and then he stopped because he thought the character was a jerk.
Do not fuck with my sister-from-another-mister Jack Mackenroth. He will cut you.
I wish he had given the entire show a chance. It’s only 55 minutes long!
Try to get a hold of yourself, Christian. We have an even larger chasm to cross. There is a twist in the finale that I guess I shouldn’t reveal. But it made me so, so mad. I refuse to discuss it! But I’m still mad.
I want the controversy. I think any show that has people talking about it around the water cooler is doing something right.
OK, fine, we won’t discuss it at length during this interview. We’ll take it outside when we’re done and settle it like men.
What kind of men?
Never you mind, Missy. Forget it. I forgive you because anyone who reads my blog knows how much I love the intersection of HIV advocacy and art, and your show is a wonderful example of that. All my best, Christian! And more sex in season two, please. Sober sex.
Sober sex is already in the outline!
Tags: acting, advocacy, culture, gay, hiv, meth, physician, recovery, Recreation, Sexuality, testing
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Saturday, March 5th, 2016
In a forsaken block of Santa Monica Boulevard, off the street and through an imposing industrial alley, a Hollywood disco opened in the late 1970s that made promises the other gay clubs were loathe to keep.
The two-story face of a clown, with an enormous, yawning mouth serving as the front doorway, stood sentry. There were no rules for entrance, no discerning bouncers selecting the lucky ones, no outfits to be appraised. Anyone who scraped together the cover charge was welcome.
Across town in the shining gay mecca of West Hollywood, dance clubs and bars like Studio One and Mother Lode pulsated with the new, synthesized beat of Donna Summer. Her mind-blowing dancefloor smash, “I Feel Love,” played on a seemingly endless loop. But love was often conditional in those clubs, which were populated by gay men with impossibly muscled bodies and skin only as dark as a California tan would allow. Love had standards.
Circus Disco — along with the Los Angeles black gay club, Jewel’s Catch One — practiced a truer level of acceptance, filling its dance floor with a largely Latino and black clientele, but the crowd didn’t simply cross racial divides. Peppered among the partying throngs were transgender pioneers and leather men and drag queens, gyrating to the new music of the B-52s and sharing powdery glass vials from one clutch of dancers to another.
I was one of those misfits when I discovered Circus Disco in the late 1980s. I bore the inner mark of the new plague, having tested positive for HIV in 1985, and it felt like a secret that disqualified me from the male magazine perfection of West Hollywood. The murderous storm of AIDS struck without interest in outward appearances, of course, but with my feelings of woeful damage I needed desperately to believe that Circus Disco was the oasis it promised to be.
It did not disappoint. A buoyant cross section of humanity greeted me each weekend to a tempestuous party where you could fall urgently in love while in line for the bathroom and furtive sexual fumblings happened in plain sight. The citywide racial tensions that would eventually lead the city into riots were mercifully muted. The dance floor crowd was as multi-colored as the light show.
Joyous exuberance reverberated with the thundering dance floor beat as shirtless men celebrated a confident sexuality and the limitless possibilities of life ahead. The constant thump! thump! thump! of the music was our clarion call and it proclaimed, Here! Here! Your tribe is here!
We were so beautiful, in ways we were much too young to know.
Circus Disco partied on through the 1990s and beyond, impervious to fickle music trends and even resisting pressure to remove the word “disco” from its name. The crowds ebbed over the years but the club never faltered, right through its recent closure, in the genuineness of its welcome.
And now, in a story that might only happen in Los Angeles, historic preservationists have convinced new property developers that the Circus Disco building warrants respect for its place in LGBT history. Portions of the club, such as the dance floor and mirrored ball and even the clown face entrance, will be incorporated into the design of the apartment building the site will become.
Like many of my dance partners from those nights at Circus Disco, I am now many years and thousands of miles from the magic of the club’s brightly lighted floor. We are a scattered people.
There are those, too, who were swept away by the firestorm of AIDS. Remembering the lost, their lives extinguished in the very years they found the community they sought, makes me all the more grateful that Circus Disco will be memorialized. It was as much a force for good in our community, in its own way, as any LGBT organization of that perilous time.
Circus Disco is lost to the ages now, but residents of the new apartment building would be wise to listen carefully for sounds coming from another era. The DJ is spinning and the disco divas are cooing, inviting legions of spirits back to the dance. There are boisterous people, a glare of silhouettes in a laser show, stepping onto the floor. The crowd is swaying to the beat and laughing and holding one another. They are all beautiful, and they know it at last.
And they feel love.
Thursday, January 14th, 2016
Dr. Oz has a very strange verbal compulsion. He can’t stop making lame metaphors.
When taking an early morning jog with Charlie Sheen, in the first of their two-part interview for The Dr. Oz Show, the doctor sees metaphors everywhere. “You have to look down so you don’t see how steep the hill is,” he says as they putter upwards. “It’s sort of like life, isn’t it?”
Descending the hill sparks another metaphoric burst from the talk show physician. “It’s always easier going downhill,” he says to Charlie. “What’s going downhill like now that you’re public about your HIV?”
It became tough not to participate. Oh look, doctor. A rock. It’s like the hard place Charlie has found himself. Or maybe it’s the blunt instrument I will use to bash my head in after watching this inane, dangerously misinformed interview.
I had such high hopes. Charlie’s coming out interview on The Today Show was as focused and informative as anyone could have expected from the troubled star. I was actually moved by Charlie’s discomfort, and related to his obvious apprehension about making such a public disclosure. Better yet, the interview had the entire world talking about the meaning of “undetectable viral load,” something I never saw coming and a great service to HIV education.
Well, it was great while it lasted. I am dismayed to report that Tiger Blood Charlie is back and he has gone rogue. And his Chasing the Cure! conversation with Dr. Oz might be the worst thing to ever happen to AIDS cure research, or at least the most irresponsible reporting about it.
But first, before the TV show bothers to get to the “provocative development in his search for a cure,” we must wade through the first hour and tour the home of the we’re-pretty-sure-he’s-not-batshit-crazy-anymore star. He makes healthy shakes! He loves movies! He throws a baseball! Hey, there’s the tastefully appointed bedroom where he banged and allegedly assaulted women!
Charlie does discuss his treatment and their side effects. “Poopy pants,” he reveals. His advice is to wear black underwear. I intend to contact Treatment Action Group immediately to share this revelation.
To his minimal credit, Dr. Oz shows concern for the various addictions of his guest, from gambling to cocaine, but his light touch suggests this circus can’t afford for the star to bolt. Never mind that Charlie claims he only stopped drinking once the Today Show interview was complete, and that he has tried to stop “hundreds of times” before. Appearing on national television is apparently much more therapeutic than finding the nearest rehab facility.
But on to the second hour, an in-studio interview with a live audience. This is where it gets really interesting — and gruesome and creepy and utterly insane.
Dr. Oz revisits Charlie’s hard-partying lifestyle and then asks him more questions about the horrendous, terrible news that he tested positive. The sum of the conversation was that Charlie Sheen’s diagnosis – and by extension, all of us living with HIV – is comeuppance for his crimes against nature.
But the best was yet to come. Finally, well into the second hour, Charlie reveals that his Chasing the Cure! led him not to actual experts in the field, but to Dr. Samir Chachoua, a doctor in Mexico about which little is known, except that he resembles Grizzly Adams after a hard night in Tijuana. Charlie had such faith in his quest that he stopped taking his medications in anticipation of seeing this nut.
And this Doctor of Quackery, in a phone interview with Dr. Oz, claims to have cured Charlie of HIV. “He’s the first person in history to go HIV negative,” says the Mexican madman, apparently unaware of the name Timothy Ray Brown. It’s like a crazytown online denialist come to life. But wait, there’s more.
Chachoua says, and Charlie concurs, that he drew blood from Charlie and then injected it into himself to prove his case, and that Charlie remained undetectable. Never mind that this was mere days after Charlie had discontinued his meds, which surely were still working in his bloodstream. The entire, bizarre scenario was like something out of American Horror Story: AIDS.
Back in the studio, Charlie’s own doctors reveal that his viral load has spiked again. His personal physician pleads with Charlie to go back on his meds. Charlie sunnily agrees. “What, am I crazy?” he jokes, to scattered, confused applause. Thus ends his first chapter of Chasing a Cure!
I prayed that Dr Oz would then introduce someone from the American Foundation for AIDS Research (AmFAR) to preset real facts about the current state of cure studies. Wouldn’t treatment activism icon Peter Staley make an excellent guest? David Evans from Project Inform? Please God, anyone. My prayers went unanswered.
Instead, Dr Oz turns from the actual physicians in the studio to pursue a far more important line of questioning. At this critical juncture in the interview, it was important to discuss movies.
“You describe your journey, chasing a cure for HIV,” Dr. Oz says in his most empathetic voice, “in a way that is similar to your dad’s journey in Apocalypse Now.” I’m sure Martin Sheen watched with pride, knowing his film career had become relevant again. “Has your diagnosis with HIV brought you closer to him?” The camera moves in to Charlie greedily.
Somewhere Barbara Walters was rummaging through her penthouse for a rope to hang herself.
There were actually a group of HIV positive women in the studio that day, some representing Positive Women’s Network, and during the taping they were given the opportunity to offer what was undoubtedly some much-needed perspective. But evidently they had nothing to say about Apocalypse Now or they were really bad at metaphors, because the segment was cut from the broadcast.
Charlie Sheen isn’t going anywhere soon. There is always hope he may regain his senses and become the high-profile cure advocate we need. But what we are currently witnessing is the exploitation of a deeply troubled man with multiple addictions.
Whether Charlie Sheen follows the path of other distressed celebrities, be it recovering addict Robert Downey Jr. or the very dead Amy Winehouse, remains to be seen.
(This piece originally appeared as one of my blog postings for POZ.com — Mark)
Tags: advocacy, aids, culture, help others, hiv, physician, politics, recovery, research, testing
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Tuesday, January 12th, 2016
When he conducted the funerals, Tom Bonderenko tells me, he always wore his priestly garments and white stole. Even when no one showed up for the graveside service.
“It was important to show dignity and respect,” Tom says. He taps the coffee cup in his lap nervously. “I’m sorry,” he says. He clears his throat but it doesn’t keep his eyes from welling up. “No one has asked me about this in a really long time.”
We are sitting in his office at Moveable Feast, the Baltimore meal delivery agency for those with life-threatening illnesses, where Tom has served as director for the last eight years. His office is spacious and cheerful, but this conversation is a difficult one. He had discreetly closed his office door behind me when I arrived.
When Moveable Feast was founded in 1989 to deliver meals to home-bound AIDS patients, Tom was engaged in a different, more literal ministry to the disenfranchised. He was a priest staffing a homeless shelter for Catholic Charities of Baltimore. It was there he met someone with AIDS for the first time.
“A young man came to the door of the emergency shelter, sometime in 1987,” he says. “He was covered in black marks. Lesions, you know. Everywhere. He said he needed to clean up before his first doctor appointment the next day.”
Tom had grown up in New York City, and as a gay man he had known people who died very suddenly, as far back as the early 1980’s. But he had never stood face to face with someone so ill with the dreaded disease.
I couldn’t help but ask Tom how he felt, meeting that person.
Tom stares out his office window, and his eyes are so beautiful, romantically blue, framed with creases of worry. The eyes of a priest. He turns back to me with an answer. “Here was a young man who was going to find out from a doctor the next day that he had AIDS,” he manages. He starts tapping his coffee cup again, and he bows his head reverently. “And he was about to be told that he was going to die.”
Tom never saw the young man again.
People with AIDS became more common at the shelter before long. Tom got to know the regulars, and they began to ask him to perform their funeral services.
“They just wanted to know they would be buried,” he says quietly. “They didn’t want or need anything religious. Most of them were estranged from their families, drug abuse, that sort of thing. I think they were embarrassed to reach out to relatives. Sometimes, when they died we would find a member of the family to come, but usually it was just me and the departed at the gravesite.”
The burials were performed at unmarked graves in a lonely section of Baltimore Cemetery. The caskets were as charity required, simple wooden boxes, and they always contained a body. The funeral home would not cremate someone who died from AIDS because they were afraid of poisoning the air.
“I would always conduct the service out loud,” says Tom, now sharing the sacred details. “I would speak about the departed, and say what I knew of them, about where they were from. And then I would ask if anyone present had been harmed by the departed…”
I imagined Tom, in his vestments and alone in a forgotten graveyard, asking intimate questions out loud to the grass and the trees and the disinterested silence. “I would say that if the departed had harmed anyone,” he goes on, “for that person to please forgive them.” Tom’s voice falters. “And then I would ask the departed to forgive, too. I would tell them, ‘you’re on the other side now. Let it go.’”
“I think they just didn’t want to be alone,” Tom says, and now he looks at me without regard for his tears. “We don’t do this alone.”
Because of you, I think to myself. They weren’t alone because of you, Tom.
“I’m so sorry,” he says, again, wiping his face. “I haven’t talked about this in so long.” He considers the faraway scene he has conjured, his graveside questions to no one, and then adds, “It was the most important, meaningful thing I have ever done.”
I wonder aloud if the experience bolstered his religious faith or challenged it instead. He looks surprised by the question. “Well,” he answers after a moment, “I believe it strengthened my faith. Yes.” I want very much to believe him.
Tom left Catholic Charities, and the priesthood, not long after he conducted the last of his burials for the homeless. A decade later he joined Moveable Feast and embraced its mission to provide sustenance for people in need, people like those to whom he once ministered.
Tom’s fellow staff members know little about his life a generation ago. Most of them aren’t aware of the aching memories beneath the calm surface of their sensitive and capable boss. They may not fully understand why Tom leaves the office once a month to distribute food personally to homebound clients.
But they will tell you that when Tom Bonderenko returns from those deliveries, he always has tears in his eyes.
(I was struck when Tom said to me, “No one has asked me about this in a really long time,” because there are so many more stories out there for the asking. We only have to reach out. I hope you take any opportunity to have a conversation with someone “who was there.” This history must be chronicled and preserved. — Mark)
FRIENDS: I have become so impressed with Moveable Feast, so much so that I am riding 140 miles to raise money for them. If you enjoyed this profile on their director, or you just love me in general, I urge you to visit this link and make a donation of any amount. 100% of your gift directly benefits their clients!