Posts Tagged ‘politics’
The Day Larry Kramer Dissed Me
Tuesday, January 31st, 2012
The mall was abuzz, with people darting in and out of stores, wrangling their kids and chatting on cell phones. I preferred it that way, because it kept Larry in a fairly calm state of quiet attention, ever vigilant as to where and when his next mortal enemy might appear.
“Hold the railing, Larry,” I instructed as we stepped onto the escalator. He was still wobbly from the blood rush of spotting a confederate sticker in the parking garage and I felt protective when strolling with such a national treasure.
“How about I just lick the ass of a green monkey?” Larry replied. “If you knew the germs on these rubber banisters you’d slit your fucking wrists…” He trailed off.
“Then hold my hand, Larry,” I countered. He complied, if only so he could launch our clenched hands above our heads, as if we’d just been pronounced married or one of us had won a title match. He kept our hands there the whole flight up the escalator. When I glanced at him his eyes were years away and his lips moved quietly. A White House protest, I figured. Or perhaps a pharma demonstration.
Well, he likes this and he’s calm, I thought. Maybe we can do this on the way back down.
It was hard enough getting him to the mall at all. I had arrived at his place just in time to break up an altercation between Larry and the mother of the Girl Scout from whom he had ordered eighty boxes of Thin Mints, which were presently scattered across his front porch and had suffered the wrath of Larry’s ACT UP boots.
Larry had no intention of paying for the cookies, as it turns out. He was ferociously screaming that his non-payment was to help bankrupt the corporate pimps RAPING THAT LITTLE GIRL! Both the mother and the girl in question had taken refuge in their car, the girl crying hysterically about not wanting to be raped, while I managed to hold Larry back from beating their Honda with a lawn sprinkler until they made their eventual escape.
But that was, after all, fully two hours ago, and multiple indignations could befall Larry Kramer in the course of an afternoon. All things considered, we were having a lovely day.
There were minor snafus, of course. Already, a Sprint salesperson had paid dearly for his unfamiliarity with rollover minutes or the level of employee giving to needle exchange. As we passed Abercrombie & Fitch, Larry stopped in their doorway and bellowed “FAGGOTS!” again and again, for two full minutes. It might have gone on were it not for an astute customer in the Barnes & Noble, who brought over a copy of “The Normal Heart” for his signature. The gesture appeased him, then produced weeping and finally Larry’s agreement to relax on a bench while I stroked his back.
“You could do with a little less drama, you know,” I offered.
“Fucking murderers,” he replied, but his fatigue was setting in. “Drug companies. Politicians.”
“Let’s not forget organ donors, sweetie. And surgeons who install livers into the bodies of old, wrung out former drug users.” Larry made a dismissive, huffing sound.
“You’re an apologist, Mark. You forget too much.”
“You remember too much, pumpkin. Now let’s check out Macy’s. I need socks.”
The Macy’s perfume spritzer girl couldn’t list the chemical compounds in “Citrus Spring,” so of course Larry brought her to tears by saying it was she, and not the perfume, that smelled like a dead lab rat. He upped the ante by grabbing bottles of nail polish from the counter and splashing her in Jungle Red while screaming “the WHOLE WORLD is WATCHING!”
Then all hell broke loose.
Security arrived and found a crying, seemingly blood-soaked spritzer girl and Larry, elated at the appearance of men in uniform, dropping to his knees, continuing his chants, and then collapsing onto the floor in his best dead body position. A twittering crowd quickly formed, some of whom had followed incredulously since the scene at Abercrombie.
I considered making a chalk outline of Larry — I kept a piece in my jacket for occasions like this and it gave him such joy — but something in me snapped.
“Get up this instant, Larry,” I ordered, and he opened a dead eye. The security gentlemen seemed relieved someone was taking charge of the deranged elderly man lying prone before them. “I’ve had enough for one day. Save it for the National Mall. World AIDS Day is coming!”
He cocked his head towards me. “What would you know about AIDS, Mark? You’ve never had infections! Where are your lesion scars? You still have your first fucking liver, you pretender! You lightweight!”
A woman in a nursing uniform broke through the crowd and looked back and forth between the spritzer and Larry, trying to determine who needed help most urgently. Everyone, including the sales girl, nodded in Larry’s direction.
“Sir, have you fallen? Do you understand me?” she asked him.
“Fuck yes. Shame on your profession and your paralyzed inaction in the face of… of…” Larry contemplated what the woman’s worst offense might be while surveying the floor around him in hopes of locating more red polish to splatter. He found none.
“Sir,” she went one, not yet convinced of his stability, “who is president of the United States?”
God I wish you hadn’t asked that, I thought.
“Shall we catalog them?” Larry bellowed. His second wind was now in full gale force. “First, Ronald Reagan has the blood of our brothers and sisters, too many of them, on his hands. He murdered them as sure as I’m standing here,” a posture which was technically inaccurate, although Larry did allow his oratory to raise him to a kneeling position.
“I can take him from here,” I interjected, and pulled Larry up and beside me. “If you’ll just allow me to get him home…”
“And then Bush continued the slaughter! He treated us like shit!” came the next outcry.
The security men agreed without hesitation. “If you can take responsibility for your father and agree to exit immediately…” one of them said. I actually half laughed at their mistake, and at the irony.
“No problem,” I promised, and we said our goodbyes as Larry’s outbursts trailed again and we walked back to the escalators.
He took the railing without protest or remark, and that disappointed me. I kind of missed riding down with our clasped hands thrust defiantly in the air.
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This is a work of fiction. I have never had the honor of meeting Mr. Kramer. Originally posted in May of 2010, I couldn’t resist sharing it again. And yes, I have it on good authority that Mr. Kramer enjoyed it.
Tags: aids, culture, gay, hiv, politics, Sexuality
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 2 Comments »
HIV Positive Criminals: Have Sex, Go to Jail
Thursday, December 29th, 2011
This may be the defining HIV issue of our time, and it is a true test of our compassion and understanding of both HIV stigma and the law. Please read this closely.
Around the country, and without leadership or guidelines from the Federal government, individual states have taken it upon themselves to draft laws that “protect” people from those of us with HIV. Whether using bio-terrorism statutes (!) or simple “assault with a deadly weapon,” people with HIV who do not disclose their status to their sexual partners are risking arrest and prosecution.
You’re already having a visceral response to this scenario, aren’t you? You may have the vague feeling that anyone who doesn’t disclose their HIV+ status to a partner probably deserves to be punished. Don’t worry, you’re not alone. Not only do most people support laws forbidding sex without disclosing an HIV+ status, but even a majority of gay men support such laws, and it is understandable, albeit a misinformed view, as to why.
Many of us know someone who was infected by a partner who didn’t disclose their status, or even lied about it. I have friends who dated someone claiming to be negative, until they found a telltale prescription drug bottle and then discovered they had been infected. Worse yet are the news reports showing some big, scary black man who has been raping white women and infecting them with HIV. How could anyone argue against bringing these liars and malicious infectors to justice?
But the sad fact is, most prosecutions under these laws are not being imposed against those who are deliberately malicious or even criminally negligent. They are being imposed using not science, but the same ignorance, stigma, homophobia and racism that has plagued HIV/AIDS throughout the years. And well intentioned people like you and me are buying into it.
In Texas, a man is serving more than twenty years for spitting on a cop, despite the impossibility of transmitting HIV. And in the vast majority of cases against people having sex without disclosing, no transmission even occurred. In fact, whether or not there was any real risk of transmission is of little concern to prosecutors. People on medication with no viral load, for whom transmission is a remote possibility if at all, are being sentenced to jail time for not disclosing — even if they used a condom and did not transmit a thing. And the sentences are outrageous: decades of jail time in many cases.
Consider the black woman for whom disclosing her HIV status is more than a mere embarrassment; it could mean the collapse of her support network, the loss of a job or even physical danger. She is a compliant patient with no viral load, and insists her sex partner uses a condom. He somehow learns of her HIV status, calls the cops, and she is prosecuted and imprisoned. These are not fantasy scenarios, they are happening with increasing speed around the country.
The effect of these laws on public health is sobering. If those who know their status risk prosecution for not disclosing, and those who don’t get tested at all can have sex without legal consequences, how does that draw people into HIV testing? As activist Sean Strub says, “Take the test and risk arrest.”
The laws in some states are written so strictly that it is a legal risk for any HIV positive person to have sex at all. All the prosecutors need is to know you are HIV positive and you had sex with your accuser. If the accuser claims you didn’t disclose, you’re in for an uphill battle convincing a judge otherwise. You’re saddled with the distasteful nature of any positive person actually having sex, and if it was gay sex, well, God help you.
Activist Sean Strub has taken this issue up as a personal crusade. I first met Sean two years ago when I produced a video blog with him discussing the issue of HIV criminalization. He took it to the United Nations AIDS Committee last month, and brought along two heartbreaking stories in the testimony of Robert Suttle and Nick Rhoades.
Please take three minutes to watch the testimony of Robert, who was jailed for six months and will be labeled a sex offender for years — it is emblazoned on his driver’s license in red block letters.
And then watch Nick describe how he had protected sex with a partner, and an undetectable viral load, and by not disclosing his status he found himself in solitary confinement for months.
Sean’s own testimony about people with HIV being viewed as “vectors of disease,” with less rights but more responsibility to disclose, and you may view this issue quite differently than you do now.
Sean has also produced a trailer for a film he is producing, “HIV is Not a Crime,” and I urge you to watch it.
I have been invited by Sean to assist him in his work for the next several weeks, and will devote the month of January to helping him establish an online resource for the issue, culminate stories of those prosecuted, and bring the maddening personal stories of those prosecuted to a broader audience.
Is your record of disclosing your status perfect? Mine isn’t. I have been a compliant patient for many years and have an undetectable viral load. There has been instances in which disclosure felt unsafe, or I was in environments such as public sex clubs in which no one is asking or telling.
I don’t believe I deserve to go to jail for those indiscretions. Do you?
Tags: aids, culture, gay, hiv, politics, serosorting, Sexuality, testing
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 21 Comments »
The Value of Asking for What You Want
Tuesday, December 6th, 2011
Remember when we were little, and if we wanted something we simply asked for it? It felt easy. It seemed natural. And if there was really something special we had to have, there was a golden opportunity every year to ask the person who made all things possible. Santa Claus.
But then we got older, and life became more complex, and we were told it was better to give than to receive. Asking for what we wanted felt selfish, and many even a sign of weakness.
I wish we could look at this differently. Admitting we want something can be liberating. It acknowledges we are human, and there is grace, beauty even, in revealing our need and being vulnerable and allowing someone to help us.
Just because we don’t ask for toys anymore doesn’t mean we don’t want anything. We want friendship. We want to be accepted. We want our health. Maybe it’s asking a friend to listen, or wanting a medication with fewer side effects.
Just saying, I need this. I want to feel better. Or, I need you.
Wanting is not limited to children, my friends. But we might take a lesson from their transparency. Sometimes the answer, the help we need, the gift waiting for us, will only appear when we take a chance, when we finally have the courage to ask for what we want.
Happy holidays, and please be well.
Mark
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(I don’t think I’ve ever been more excited about a video blog than the one premiering here next week: The “My Fabulous Disease†Holiday Spectacular! A dozen of my relatives have come together to bring you comedy, Christmas cookies, a little drag, a visit from Santa — and some very candid feelings about loving a family member with HIV/AIDS. I hope you‘ll come back next week and meet the family! — Mark)
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PLUS…
A word, if I may, about my recent posting “The Long Road Home from Relapse,” which managed to break traffic records on my blog, generate amazingly supportive comments, and also became its own source of concern among some of my fellows in recovery. As a few of the comments suggested, my drug relapse was a serious event that even I may not fully appreciate just yet, much less be able to distill its lessons to my readers. Some felt that writing about it so soon after the fact seemed cavalier. I’d like to say that my actual recovery process — the work I do on a daily basis to rebuild and maintain a clean and sober life — involves many things that are completely unrelated to my writing. It is ongoing and intimate and I take it very seriously. I considered withholding the relapse from my blog, but it just felt dishonest not to talk about it. My point is, there is work ahead for me that I hold dear and will keep to myself, my sponsor and my God. As Tony Kushner writes in the last line of Angels in America, “the great work continues.”
The madness continues of criminalizing those with HIV who do not (allegedly) reveal their HIV status to their partners, and new cases are piling up around the country. These include many prosecutions in which protection was used and no transmission occurred. But only now have we been able to hear the voices of those who have experienced this Kafkaesque nightmare. In his upcoming documentary “HIV is Not a Crime,” AIDS activist and writer Sean Strub gives voice to the “criminals.” Their stories are riveting and heartbreaking, like that of Nick Rhoades, right. You can view a terrific trailer on YouTube, and I dare you not to let it make your blood boil, positive or not. I urge you to take a look and get educated on what is becoming a defining HIV issue for our time.
Did you catch all the media attention last week stating that people with HIV aren’t taking very good care of themselves? Oh yes indeedy, the news reports, with headlines like Few in US with HIV have virus under control, and HIV Out Of Control In US Patients, seemed to suggest that it was people living with HIV who somehow haven’t been doing the right thing to maintain their health. And that’s a load of hooey, as my dad used to say. It turns out that the reports were misrepresenting a new CDC study showing that less than half of HIV patients have access to proper treatment. As in, not their fault. This distinction was made in an eye-opening blog posting by Housing Works, in which the actual study vs. the media reporting is clearly explained. “We are facing major budget cuts in homeless services, housing, testing and prevention,” blogger Kenyon Farrow states. “These all prevent people with HIV from staying healthy and make many more people vulnerable to infection… By focusing media scrutiny on government officials, the public would be better informed about who’s really ‘out of control.’â€
The Windy City Times continued a remarkable year-long commitment to covering AIDS this week, which is really a story in itself — a gay paper intent on maintaining visibility of the crisis in commemoration of the 30-year milestone. So I am especially excited that the paper chose to run a profile about My Fabulous Disease as part of their World AIDS Day coverage. Writer Joe Franco, intrepid journalist that he is, took the time to both interview me and actually watch most of my videos, if you can imagine. In his piece he manages to discuss AIDS, community, comedy, drug addiction and drag. In other words, it’s a fair representation of what you get around here on a regular basis. My mom loved it.
Tags: culture, family, gratitude, help others, hiv, politics, recovery, Sexuality
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 6 Comments »
Finding Support in an e-Patient World
Monday, September 26th, 2011
You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvelous people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment – and for the companies who want to reach us as consumers.
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?†that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.
I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions – cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more – and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values – sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,†such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I tend to view HIV/AIDS as “terminally unique,†there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the healthcare revolution will be televised… on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.
Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]
Mark
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PLUS…
Ready for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!
Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.
No sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,†the sperm bank’s director said. “I do not think you chose a redhead, unless the partner — for example, the sterile male — has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.†It ain’t easy being orange.
Tags: aids, culture, help others, hiv, physician, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 13 Comments »
How the Denver Principles changed AIDS (and health care) forever.
Wednesday, September 14th, 2011
You must know this, because it matters. Because it has already changed your life and you may not even realize it.
It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. (And among their number, the inspirational Michael Callen of New York City, pictured at right, and Bobbi Campbell of San Francisco.) They were about to do something that would change our response to AIDS — and health care in general — forever.
As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment†hadn’t yet been a part of the health care lexicon, it was about to be.
The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’â€
The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.†Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.
They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.
They demanded that physicians see their patients as “whole people,†and provide “accurate information.†They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.
They asked “all people†to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.
Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else†for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.
While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.â€
A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.
Longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event last year. He devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That work continues today, with a planned meeting of activists underway to map the criteria of the Index.
Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980’s and 90’s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.â€)
The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.
So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.
(When I was invited to participate in an “e-Patient Bill of Rights Roundtable” at a conference for internet-based health bloggers and web sites next week, The Denver Principles immediately sprang to mind. So why not revisit this part of our history as people living HIV/AIDS and their advocates? This is a revised version of my posting from May 4, 2010. — Mark)
Tags: aids, gratitude, hiv, physician, politics
Posted in Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 7 Comments »
The Entire 2011 ADAP Conference in Nine Minutes!
Tuesday, July 19th, 2011
The 2011 ADAP Advocacy Association (aaa+) conference held July 5-7 in Washington, DC, was bursting with spirit. Dozens of advocates from across the country met for three days of workshops and speakers, and in this video blog, you’ll see the entire conference boiled down to only nine minutes. I’m the cliff notes of HIV/AIDS events!
From people like Robert Breining of POZIAM from Philly to Lepena Powell Reed from Tampa, there was no shortage of passionate voices. But there were more than a few things on the conference agenda that really surprised and educated me — and provided resources I never knew existed.
Take the Patient Advocate Foundation, for instance, my great discovery of the conference. Did you know there is a non-profit foundation that focuses on resolving disputes between you and your insurance company or medical provider? Whether they are refusing to pay for a medication, or questioning a procedure, this Foundation will fight for you. They have garnered such a reputation that many companies just fold when they see the Foundation coming.
There may be politics involved here about which I am unaware, but where were our large national organizations? Frankly, I was disappointed to see a conference devoted to arguably the most pressing HIV issue of the day, held right in the DC home of most national agencies, and yet major organizations like the National Minority AIDS Council (NMAC) were not represented. As one speaker shouted from the podium, “WHERE YOU AT?â€
(To NMAC’s credit, they recently launched their own web site devoted to the ADAP crisis, with much of the same information available through aaa+. The more the merrier, of course, but I sure wish large organizations would pool their efforts and support one another.)
As usual at these type events, the real value is in the company of like-minded folks trying to do the right thing, and some of our greatest champions were there, like Butch McKay of the Positive Living Conference (one of the last conferences serving those living with HIV, and the best of them all), Dab Garner of Dab the AIDS Bear Project, and Bill Arnold of the Community Access National Network (CANN).
We shared meals and gossiped about news in the HIV/AIDS arena, and ventured out in DC for a dinner here and there. Some of us ventured even later, and further, but young activists these days, whatcha gonna do? I wish I had the stamina of advocates like blogger Christopher Myron, or World AIDS Institute founder David Purdy!
But back to some great resources for you. Have you heard of the Pre-Existing Insurance Plan (PCIP)? It provides health insurance to those who have been uninsured for six months or have been denied coverage. It’s a governmental program designed to help get people insured while we’re waiting for the new health plan to kick in, which happens in 2014. If it sounds like you qualify, I urge you to contact them at 866-717-5826. The premiums are based on what a healthy person would pay in the same market.
Attending conferences like this one is a privilege and a responsibility. The AIDS Drug Assistance Program waiting list continues to grow on a daily basis, denying patients the very medications that can keep them alive. This national disgrace deserves our attention and our phone calls to our elected officials, urging them not to forget the most vulnerable among us, even in times of fiscal crisis. Today is a great day to pick up the phone and contact your U.S. representatives, and tell them that you want them to support (or keep supporting) funding for ADAP.
In the meantime, my friends, please be well.
Mark
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PLUS…
It appears that poz queens like me have got nothing on Michelle Anderson. The Texas beauty was recently crowned the 2011 Ms. Plus America (which celebrates “the essence of the full-figured woman”), and Michelle’s platform is the impact of HIV among women, especially women of color. But there’s more. Michelle is also the first openly HIV positive woman to win a national beauty pageant title! She knew all along that entering the pageant could mean becoming a high-profile HIV positive role model. “I entered the pageant to create a voice for women, while raising awareness, educating and empowering women,” Michelle says. “I wanted to show that in spite of my diagnosis, I can still live a happy and prosperous life!” (Photo credit: Brett Vander Photography)
Artist Emilio Aponte is influenced, as he says, “by everything I see, feel and experience…” Considering Emilio is an HIV risk reduction coordinator at the Pride Center in Ft Lauderdale, it’s no wonder that his current exhibit there, “Ribbon HIV,” focuses on HIV prevention and education (at right, a detail shot from his piece, “Mutants”). And what a stunning collection it is — high contrast black and white “manipulated photos” that all have a touch of red somewhere, reminding us the virus is still present in everyone’s lives. Beyond the images themselves, Emilio accompanies them with brief, positive statements about protecting oneself from HIV risk, or taking care of yourself if you are living with HIV. It’s a beautiful collection with a terrific message. The exhibition is open to the public at the Pride Center, Main hall from July 5 to August 7, 2011 from 11:00 am to 9:00 pm.
Two exciting new clinical trials have shown the efficacy of “pre-exposure prophylaxis” therapy (taking a drug to reduce your risk of infection before engaging in risky activity). This seemingly bolsters the strategy of using meds for HIV negative people who are at risk of becoming infected, as well as the “treatment as prevention” strategy of having those with HIV on drug treatment. Not so fast, says Poz.com editor Regan Hofmann in her latest blog posting, “Not Drinking the PrEP Kool-AIDS.” Regan isn’t sure the study data is strong enough, and the daunting task of delivering meds to every negative person who might need it is a tall order. She doesn’t mince her words: “PrEP is a profit-driven sex toy for rich Westerners, disguised as a harm-reduction and prevention tool for disenfranchised people at risk for HIV.”
Tags: aids, help others, physical, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 12 Comments »
Should AIDS Activists and Pharma Just Get Along?
Tuesday, July 12th, 2011
I’m having an identity crisis. Am I an AIDS activist, ready to question authority and demand high standards of service for those living with HIV/AIDS? Or am I a “resource†for the pharmaceutical industry, so that they might craft more effective community programs that will lead AIDS patients to “care.â€
And that care, no matter how they frame it or how sunny the smiles of their community liaisons, ideally would lead patients to their HIV drug product line.
In this video episode of My Fabulous Disease, I take you along to a community advisory board meeting (CAB) for HIV drug manufacturer Janssen Therapeutics, formerly known as Tibotec. There was something about the cordial way in which the invited HIV advocates provided helpful feedback to the pharmaceutical executives that felt… a little strange.
Although I have agreed to keep the particulars of the meeting private, I will say that there were no fireworks on display – or any real antagonism to speak of. We advocates (”activists” seems like too strong a word) offered our best advice to Janssen, they appreciated it very much, lunch was served, and everyone left happy.
And I felt as if I had failed somehow. I had allowed the topics to be entirely in the hands of our hosts, and any issues that deserved discussion but were not on our elegantly typed agenda – educating patients about treatment risks, or, God forbid, drug pricing – were never discussed. I didn’t feel like much of an activist. I felt like a focus group member.
It’s very possible that my attitude here is outdated. In the early days, we took to the streets because societal apathy and ignorance demanded it. We protested and threw red paint and otherwise shamed the pharmaceuticals into better medications, broader access and more community involvement. Those battles were waged (and largely succeeded) many years ago, while pharma has come through with an astounding arsenal of successful HIV medications. Why does something deep inside me resist civil dialogue that advances our mutual interests? Am I living in the past, being an activist without a cause?
Clearly, we have some common goals, chief among them HIV testing and access to treatment. And pharma has resources that community organizations could only dream of, so advising them on creating the best campaigns possible (to get tested, to “get into care”) makes sense. So why was I so ambivalent?
Activism should make people uncomfortable. Just ask Larry Kramer. I watched the late, great Martin Delaney, founder of Project Inform, demand in similar meetings that more be done in terms of drug efficacy and proper data and experimental drug access. He made me very uncomfortable and I was on his side. Martin usually got what he wanted. And he wanted it for you and me.
At least, through this video, I get an opportunity to discuss some pressing concerns not covered in the community meeting. I question some basic assumptions, such as whether our hard work on the ADAP crisis is pulling attention and resources from the “big picture†of pharma drug pricing and generics, and I offer an indictment of our U.S. health care system for good measure.
There are still confrontations to have and tough arguments to make, and the agendas of advocates and pharma alike should always be questioned.
It just might be a little uncomfortable.
Mark
(”Enjoy AZT” image credit: ACT UP New York)
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PLUS…
This blog is officially an “award winning” blog! The hard working folks at the ADAP Advocacy Association (aaa+) have honored me — and I most sincerely am quite honored — with an award for Social Media Campaign of the Year. The award was part of their first annual ADAP leadership awards dinner, held as part of the ADAP conference held in Washington, DC. aaa+ was impressed with my video blog about the ADAP summit last year, particularly with the simple instructions it gave on contacting your elected official about funding ADAP (it’s not too late to do that, you know). I am in good company: other award winners include Dab “the AIDS Bear” Garner, Butch McKay of the Positive Living Conference, and even my local pharmacy patient advocate here in Ft Lauderdale, Jason King (no relation) of AIDS Healthcare Foundation Pharmacy.
I may not be on the singles market, but I sure do appreciate the advice provided by AARP (!) in their online feature, “The Gay Man’s Guide to Dating Over 50.” Most of the piece, by gay writer Dave Singleton, is solid self-esteem building, which is great advice for any age. I’m particularly guilty of being age conscious and grieving my distant youth, so I needed to read this: “Give up trying to be perfect, too, especially if that’s a code word for ‘young.’ Yes, it’s important to take care of your body and your health, but no need to obsess. Instead of trying to be 25 again, get comfortable in your skin. Feel good about your body. That way, when someone touches you, they’ll really feel you, and not a bundle of self-critical tension. Think more about keeping a sparkle in your eyes and less on fighting the fine lines around them.” Maybe next time, Dave will offer a little safer sex advice for those over 50 who actually get lucky.
You may know that, in a 2010 CDC study of 21 major cities, 1 in 5 gay men were HIV positive. But did you know that half of them do not know they are positive? And that young black and Latino men under 25 were the least likely to know their status? Gay Men’s Health Crisis (GMHC) in New York is hoping to change that in their new “Kiss and Tell” campaign. “Kiss & Tell” encourages black and Latino young gay men to have discussions with partners about their sexual history and HIV status, and includes education, networking and skills training. “This campaign reinforces GMHC’s ongoing commitment — since our earliest days — to addressing homophobia and reducing the spread of HIV among gay men,” said Marjorie Hill, PhD, Chief Executive Officer of GMHC. “The campaign directly challenges homophobia, and acknowledges the value of relationships in the lives of young gay men while encouraging dialogue.”
Tags: aids, hiv, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 20 Comments »
Hiding from the “AIDS at 30″ media storm.
Tuesday, June 14th, 2011
I shuttered myself from most of the hoopla surrounding the “AIDS at 30†milestone (we seem to have agreed on June 5, 1981, when an item in the Morbidity and Mortality Weekly Report reported deaths among gay men). The trauma of those early years is tough for me to revisit. Every media piece seemed to be about the past and it all felt emotionally overwrought and indulgent. I skimmed the coverage and secretly wished it would just go away.
Revealing the intensely personal isn’t normally a problem for me; I wasn’t shy about addressing our darkest days in my video blog entry Once, When We Were Heroes (right), so it’s not like I can’t go there. Maybe the sheer volume this month of tragic stories and heartfelt blogs and “I Was There†interviews was too much for my scarred psyche.
It could also be an ego thing. All these extra voices showing up and piling on their stories. Hey Missy, that’s my gig, move it along, thank you very much. During the media frenzy of “AIDS at 30″ I felt like a professional drag queen refusing to venture out on Halloween. Too much competition. And from such amateurs.
This week I finally paid more attention to what has been written this month, and of course, it’s pretty damn good.
The 30th (what? Celebration? Anniversary? Commemoration? Did we decide on something?) yielded some tremendous coverage at The Body, my favorite online HIV resource. And obviously, how the hell can people appreciate our AIDS history is we don’t document it at every opportunity?
Asking the gay bloggers at The Body to speak back and forth between generations about their HIV/AIDS experience was inspired. Anyone under 35 is my favorite audience, although the over-40 crowd probably understand me a lot better.
I also really enjoyed Nelson Vergel’s interview with Dr. Michael Gottlieb (left), the man who published the first report of some rather strange deaths among gay men. Dr. Gottlieb also happened to be my physician in Los Angeles when I was diagnosed with HIV in 1985. During those days, I once forced Dr. Gottlieb to tell me his best guess for my lifespan, and he went out on a limb to say I could make it to 40. That birthday came and went, ten years ago. When the preeminent expert in the field gets it that wrong, you know we’ve had more success treating this virus than anyone had hoped in the early days. Thank God.
Elsewhere, I admired Regan Hofmann’s (right) recent editorial at Poz Magazine immensely. With nary a glance backward, she sat squarely in the present and outlined the thirty issues that are most important to the crisis today and in the future. It was also a solid primer on the emergence (and debates about) new prevention theories like Post-exposure and pre-exposure prophylaxis and “test and treat.â€
Once I allowed myself to “face the past” by checking out Karen Ocamb’s amazing reports from the early days of the crisis, I was happy I did. Karen is a Frontiers news editor who has been covering LGBT issues in Los Angeles for 30 years, and in her collection of stories from the AIDS frontlines of the 1980’s (complete with video she shot herself), she takes us along to an early AIDS protest (left), to early treatment activism meetings and to the unfolding of the AIDS quilt. Karen’s close relationship with history and her “home movies” give the stories amazing intimacy. I recommend the series highly.
The media rush of tragedy and inspiration known as “AIDS at 30†is dying down. As much as I want coverage of HIV and for there to be constant prevention messages, I’m a little relieved. I can comfortably go back to debating our current treatments and campaigns, sharing sweet and funny stories about my life with HIV, and wondering why the hell the media doesn’t pay more attention to HIV/AIDS.
We all have our coping mechanisms. Allow me a little healthy denial.
As always, my friends, please be well.
Mark
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PLUS…
Sean Strub is once again ringing the bell about criminalizing people who do not disclose their HIV status, and it tolls for thee. We covered some of this ground when Sean and I discussed Five Things About HIV They’re Not Telling You, but in Sean’s newest posting at Poz.com, he takes this a bit further. Are we a few short steps away from prosecuting those who do not take their medications? Sean sees the intersection of “test and treat” and the treatment of those with HIV as criminals as a dangerous mix that could theoretically lead to forced treatment, just as a prisoner might be compelled to take meds. It’s a bit chilling, and perhaps fantastical, but whoever thought there would be people with HIV sentenced to jail for 20 years for spitting?
Our national disgrace known as the AIDS Drug Assistance Program (ADAP) Waiting Lists continues, and the lines keep getting longer for patients waiting to receive life-saving medications. There are reports of patients who have died during that wait. The ADAP Advocacy Association (aaa+) continues its mission to combat this lack of funding, and in their recent blog they offer evidence that the most effective weapon in our advocacy tool kit is you, referencing a study showing that when people like you and me simply pick up the phone, it matters as much as high-powered lobbyists. And it’s simple! Take a look at my video blog from the last ADAP Summit and you can get instructions on exactly what to do. Meanwhile, I’ll be attending the upcoming ADAP Conference in Washington, DC, and will share everything I can with you.
How do we bridge the LGBT generation gap? That’s been the topic of two really terrific postings this month around Gay Pride, and the communication disconnect between young and old seems to be the culprit. I’d love to be an “older mentor,” but who would have me? What spaces encourage dialogue and a chance to share our history? Olivia Ford of The Body.com raises these concerns in her excellent piece What’s It Really Going to Take to Make it Better? Olivia knows that we have a lot to gain from inter-generational interaction, but beyond the It Gets Better Project, how do we accomplish this? Meanwhile, some people think that younger gay men are ungrateful little snots. Jake Weinraub is totally over it, in his piece What Sucks About Most Privileged Gay Men for The Bilerico Project. Both are definitely worth your time, and you should always join the conversation by posting a comment!
Tags: aids, culture, drag, hiv, politics, research
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »
Walmart Gets Better.
Wednesday, March 23rd, 2011
They always say time changes things, but you actually have to change them yourself.
– Andy Warhol
Yesterday I had a conference call with Walmart public relations manager Ravi Jariwala, and Crosby Cromwell, a manager for constituent relations. We discussed the fact that I wasn’t able to use the word “gay” in my review on the Walmart web site for the new, marvelous book It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living.
Oh, and I kind of blogged about it across the whole wide world on all sorts of LGBT sites, saying how much it pissed me off.
“I apologize that this situation has been created,” Ravi began. “It was a systemic oversight, in which ‘gay’ was on a list of filtered words. Certainly it makes absolute sense for you to include this word in your review… This is a no-brainer for us.”
He said other nice things. Crosby said nice things. No one laughed at me or called me names. They were focused on resolving the issue and pledged to have their list of flagged words changed within 24 hours.
I’m pleased to report that “gay” is now a perfectly acceptable word to include in posted comments on Walmart’s site. Other words have also been cleared, including lesbian, homosexual, bisexual and transgendered. And my review of the book, as I originally wrote it, has been posted on the Walmart site.
Here is Walmart’s official statement on the matter:
Recently it was brought to our attention that Mark King was unable to complete a review of the book “It Gets Better†on Walmart.com. We regret that a filter did not allow his review of the book to post and we quickly worked to resolve this technical issue.
We reached out to Mark directly to discuss the issue and, as an extra measure, we have reviewed the system to ensure that it will allow the use of all appropriate words related to sexual orientation and gender identity.
There is probably no national retail chain with as problematic a reputation as Walmart, and I can only imagine the topics that other advocates would have wanted me to broach with these corporate representatives. But I had one issue, one specific complaint that I asked to be addressed. And on this day, on this issue, Walmart did right by the LGBT community.
Now, everybody go buy It Gets Better.
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It’s impossible to overstate the impact Elizabeth Taylor has had on HIV/AIDS awareness and funding since the earliest days of the epidemic (Ms. Taylor died earlier today).
Since the early 1980’s, when people were still wearing masks and gloves around AIDS patients, Ms. Taylor (Elizabeth to her friends, never Liz) has been at the forefront. She organized the very first “commitment to Life” event in 1984 for AIDS Project Los Angeles (APLA) — and while doing so, learned her friend Rock Hudson was dying of the disease. She co-founded the American Foundation for AIDS Research (AmFAR) in 1985, and her own Elizabeth Taylor AIDS Foundation in 1993.
Oh yeah. And she was an Oscar winning movie star, the likes of which we may never see again.
I watched her walk onstage, in evident pain from chronic back problems, at an APLA event in the late 1980’s in Los Angeles. “With every breath of my being,” I remember her saying, “I will fight this disease and for the rights of people with AIDS, until the day I die.” And that, my friends, is exactly what she did.
Tags: aids, culture, gay, help others, politics, research
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 14 Comments »
The Book with a Promise: It Gets Better
Tuesday, March 15th, 2011
There were moments while reading It Gets Better, the new book inspired by the YouTube video project to help bullied youth, when my heart leapt to my throat and hovered there. It happened a few times, quite unexpectedly, usually while in the middle of some essay from an author I’d never heard of. In an instant, I found myself fighting back tears over the pain of someone who was once convinced they would never be happy or accepted in this world.
These emotional bombshells are the secret weapon in this collection of essays: moments of aching truth that pierce the sometimes distracting hype associated with the “It Gets Better†project and deliver an emotional wallop.
In case you don’t know (really?), the It Gets Better Project is the brainchild of writer Dan Savage and his partner Terry Miller. In response to a rash of gay teen suicides due to bullying, the couple realized they didn’t “need permission from parents or an invitation from a school†to reach troubled LGBT teens. All they needed was YouTube to talk to them directly, telling kids to hang on, that “it gets better.â€
Months before social media helped topple governments across the globe, this simple idea led a revolution of its own. It reached millions of kids and made The Trevor Project, a crisis hotline for LGBT or questioning youth, a household name. As the YouTube channel exploded, celebrities and elected officials joined the chorus of messages from everyday folks.
And now, the book. It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living (released on March 22) is “inspired†by the video project, meaning some of the essays are original written pieces while others are edited transcripts directly from videos. It’s an earnest, uneven, truly inspirational collection, with enough of those heart-in-your-throat moments to keep you reading.
Interestingly, the most famous names in the book have the least impact. Barack Obama, Hillary Clinton, Al Franken, Suze Orman (left), and even Ellen Degeneres are all here, but their pieces feel about as passionate as thumbing through their cue cards. Maybe fame leads to caution.
You’ll have to settle for celebrity twice-removed to tap a wellspring of real emotion. Randy Roberts Potts is the grandson of the late, ultra-homophobic televangelist Oral Roberts, and Randy shares a family secret more salacious than his own homosexuality: his uncle, Ronald David Roberts, was also gay, and he was so despondent after coming out to his famous father that he killed himself with a gunshot to his heart.
Randy’s own story is filled with religious and social trials, but there is victory. “I had to fight hard for it, but it finally happened,†he writes, “the freedom to just be myself.†And then he can’t resist this: “My grandfather was famous for telling people, ‘Something good is going to happen to you!’ And, it’s strange to admit it, but he was right.â€
I still have the voice of lesbian Gabrielle Rivera ringing in my ears. Gabrielle appears on page 45 and not a moment too soon, bursting with truth and anger and passion. “It kind of doesn’t get better,†she proclaims. “…but what happens is this: You get stronger. You learn how to love yourself. You learn that other people are just crazy and caught up in their own crap.â€
I’ve never been more moved by a dinner menu then I was reading the entry of food blogger Adam Roberts, who shares exactly what he prepared the night his parents came for dinner to meet the parents of his partner, Craig. Adam intersperses his coming out story with details of the night’s short rib and polenta, and the care, the sheer detail and love, with which he prepares the meal touched me deeply. By the time he served the flourless chocolate cake I was a complete mess.
Krissy Mahan from upstate New York (why are so many of my favorites from lesbians?) assures her readers that “not all gay people are urban… I’ve been really happy being a big rural dyke.†She loves country living but says “I’m sure there are some things that are kind of frustrating to you, and you’re probably rockin’ the flannel shirt every now and then, but that is going to be totally hot to somebody someday. It’s gonna get real better.â€
And even an actual reformed bully makes an appearance in the book. Joseph Odysseus Mastro is a straight 29-year-old from Oakland, California, and he has a confession to make. During high school, Joseph “was belligerent toward kids I recognized as being in the theater group, screaming ‘Fag! Faggot!’ at them.â€
Beyond apologizing to them, Joseph turned to community service. At 19, he began handing out condoms and lube outside gay clubs on behalf of an AIDS agency. “Some of my straight friends would ask ‘why are you helping out the gays?’ which is a reprehensible question in the first place, but I respond that… there are gay men who have HIV, and they’re who I want to help.†Joseph wins the Reformed Bully of the Year Award, hands down.
The real excitement of this book is imagining where it will end up – a public library in South Dakota, the reading room of a youth center on an Air Force base — and how, because we must, we get this book on the shelves on every junior high and high school in the country.
Last year, my (also gay) brother Dick and I sat down at our Mom’s house and turned on the camera. For the next few minutes we traded stories about growing up gay in the same family – about 15 years apart – and even brought out photos from our youth. We teased each other like brothers do, and it was apparent we love one another, because we do.
Our It Gets Better video became a popular entry, and we were honored to be included in this book. There we are on page 300, near the back, in a transcript of our chat that reads like a sassy play with two very gay characters. It is neither the best nor the most moving essay in the book, but it does show an easy love between us, and that alone may be of value to a LGBT youth out there. I couldn’t be more proud.
Like many people who grew up gay and afraid, my soul may have survived those years but I have a few scars left behind. It Gets Better gently strokes these wounds — the toughened and the still-tender ones — so that young people today might take heart and make the journey to adulthood a little more safely.
There’s no denying the power of this project, and what could easily be the most important book of the year.
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Word from the organizers of the annual HIV Cruise Retreat is that there are now more registrants for the November cruise to the Caribbean than ever before! I was honored to be the M.C. for the cruise last year, and honestly I had more fun than I could have imagined (nope, I’m not getting paid to participate or to promote this event). Take a look at the web site for video from last year’s event and consider joining us. It’s a largely gay group with straight allies, but without barriers or attitude, just sincere support and a lot of fun.
Tags: acting, culture, family, gay, gratitude, help others, politics, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, My Fabulous Disease, News | 4 Comments »