My Fabulous Disease

Amidst the highly charged emotions of the HIV criminalization debate, “sides” are developing. One side believes that those with HIV who do not tell their sex partners about their status should go to jail. Period. But others claim that there is little public health benefit to laws against non-disclosure because they discourage people from getting tested – you can’t be prosecuted if you don’t know your status — and there are often prosecutions in which the risk of transmission is remote or even non-existent.

But taking firmly entrenched sides helps no one. We’ve simply got to get educated beyond our gut reactions to these prosecutions. We all could use more understanding about HIV criminalization laws, how they are being applied, and whether or not they are truly serving the public good. It’s also important that we understand the anger of those who feel they were put at risk and are seeking retribution.

A full list of HIV criminalization laws – and convictions globally (including for each of the states of the USA ) can be found at http://www.gnpplus.net/criminalisation/. To find multiple resources on what to do if one is at risk of prosecution, who to call for help, what the law is in every state, or get palm cards with links to resources, visit The Positive Justice Project.

But back to the video: I couldn’t help but wonder what might happen if an HIV positive man had to sit down with his accuser and explain himself. So, through the magic of some creative editing, I produced this video episode of “My Fabulous Disease” to give a voice to the opinions and feelings of both parties. You can decide if I was successful.

I used this editing technique to comic effect in the “My T-cells Could Use a Facelift” episode (the infamous video about butt padding, among other things). I’ve been looking for a good reason to do it again, and I thought this topic fit the format perfectly.

Thanks for watching, and please be well.

Mark

(I’m always glad when you “share” my postings with the buttons below. But this post could mean the difference between someone understanding the law — and making a mistake that could land them in jail. So I encourage you to share and re-post this one in particular. Thanks.)

Tags: aids, barebacking, criminalization, culture, politics, Sexuality
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 21 Comments »

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 | 3 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 | 23 Comments »

The ‘My Fabulous Disease’ Holiday Spectacular!

Tuesday, December 13th, 2011

My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.

And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.

Now just take that in for a moment. My family was enthusiastically participating in a video about my life with HIV. And they were much more concerned with choosing a fun holiday outfit than being publicly associated with their HIV positive relative. For them, sitting down for an interview about my HIV status, well, that was the easy part. They had no problem being candid about my HIV, as you will see.

I am an extremely blessed and fortunate man.

When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?

Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.

The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.

You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.

Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.

Mark

p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.

Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen

1 cup shortening
3/4 cup sugar
1 egg
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring

1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).

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Tags: aids, culture, drag, family, gay, gratitude, help others, hiv, recovery, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 21 Comments »

Sailing on the 2011 HIV Cruise Retreat

Tuesday, November 15th, 2011

It was my distinct privilege to serve as host and M.C. for a second time on The HIV Cruise Retreat, the labor of love by openly HIV positive travel agent Paul Stalbaum of Cruise Designs Travel. Paul has become the go-to man for gay travel groups – in addition to the HIV cruise he organizes a gay cruise and even a gay bear cruise – and he says without question that the HIV cruise is nearest and dearest to him.

As Paul and my fellow co-hosts planned the cruise events over the last few months, I was amazed by the level of detail and care with which Paul approached the task. Then again, he’s been actively involved in the HIV community since setting up and facilitating the earliest support groups in Ft Lauderdale nearly 30 years ago. His heart is in this.

It may seem curious that so many people living with HIV would spend their vacation time and money on an vacation alongside over 200 others living with the disease. But our common issue is inspiring and even a source of humor and fun.

The happy vacationers come from all walks of life and across the country, and many of them hail from smaller cities where they don’t have this type of fun social outlet for people with HIV. It’s pure pleasure being in their company.

After an opening cocktail reception (Princess Cruise Lines accommodated our large group by giving us exclusive use of various venues around the ship), hosts Nate Klarfeld and Grover Lawlis moderated an AIDS 101 presentation for the sprinkling of cruisers who were fairly newly diagnosed.

But on to the parties! This year there were two bashes: The Mad Hatter Party, where guests were invited to get creative with their headgear (I wore a crown made entirely of flip-flops), and The Blue Party, which asked the revelers to interpret the color in any way they chose. The creativity at both did not disappoint.

My comic alter ego Anita Mann (near right, in an odd, mutual chest grope with one of the passengers) made her Cruise Retreat debut this year, hosting The Blue Party and ensuring I would never date anyone on the ship, once they witnessed Anita in all her peculiar glory.

All sorts of fun events sprang up throughout the week, such as an improv class led by host Jonathan Goldman, who also provided mud masks for our day on the Aruba beach (a sight in itself I assure you). Paul also arranged our own excursions in each of the ports, so we could snorkel or tour bat caves as a group.

We had so much fun with our own events and yet the ship itself offered nearly nonstop entertainment – a casino, live shows, games on deck, and one of our group members even won the highly coveted Karaoke contest!

On our last day at sea I facilitated “Mark’s Poz Time Machine,” a multi-media review of the last 30 years of HIV. It featured images and video clips along the timeline, but relied on audience members who fleshed out the years by sharing their experiences. Thanks to their recollections and candid memories, it was a bittersweet and enlightening event. I believe so strongly in the power and importance of telling our stories and sharing our history living with this pandemic. I’m so grateful for the contributions of the attendees.

I realize how fortunate I am. So many of us are not able to take the time or devote the money for a cruise like this. It’s my hope that this video blog will inspire you to seek community, in whatever way you can, and never forget that a sense of humor sure does help the journey.

After all, you don’t really need a cruise ship as an occasion to wear flip-flops on your head.

As always, my friends, please be well.

Mark

Tags: aids, culture, drag, gay, gratitude, hiv, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 12 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 | 14 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.’”

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.”

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.”)

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 »

Those Doggone Days of Summer

Friday, September 9th, 2011

July and August were almost frantically productive for me, and I’ve followed it by the longest period of, well, nothing, since I began producing this blog. Sorry. Sometimes an HIV guy just needs to lay around and catch up on Top Chef and Real Housewives (God bless you, Bravo).

Hopefully you caught my most recent videos, such as the my examination of activism in “Should AIDS Activists and Pharma Just Get Along?” (complete with red paint foisting), or the video update on my facial filler procedure with Dr. Gerald Pierone (very informative but not for the squeamish), or the helpful tips for saving money with the knowledgeable Jason King (right) of AIDS Healthcare Foundation, whom the camera adores, and about whom I am harboring a jealous resentment (I may be petty but my grammar is pristine). And finally, it’s always ironic when hours of video editing can’t compete with one written posting the comes straight from the heart, like my tribute to Facebook putting my life together again.

But moving on.

If anyone deserves being highlighted in the media for his commitment to HIV prevention, it’s Jim Pickett of the AIDS Foundation of Chicago. In a well-written profile of Jim in the Windy City Times, you can follow his journey from waiter to activist to the man touting rectal microbicides as the next best weapon in our HIV prevention toolbox (I keep finding myself wearing a sticker proclaiming “I have Rectal Pride!” after visiting his booth at conferences). I’ve admired Jim’s work for years and this fun profile explains why. “Expecting everyone to use condoms all the time is ridiculous,” said Jim in the article. “People don’t want to use condoms their whole life. As great as they can be, there are a lot of issues with condoms.”

At the recent 2011 HIV Prevention Conference in Atlanta hosted by the CDC, I was thrilled to meet some of the dedicated members of the HIV/AIDS prevention team. What was even more satisfying was seeing their new prevention campaign targeting black MSM’s (“men who have sex with men,” who don’t always identify as gay). To date, there have been limited data about the factors contributing to the high burden of HIV among black MSM, particularly those who are young – and yet the latest CDC data show that new infections among this group are increasing every year. Fortunately, the CDC is focused strongly on this population, and previewed a major new campaign being developed to increase HIV testing among black MSM – called “Testing Makes Us Stronger” – as the next phase of its ongoing Act Against AIDS campaign.

Thank God I’m clean and sober and alive today. If I was still an active crystal meth addict, I would have missed an astounding recovery conference during Labor Day weekend, which introduced me to some amazing people and strengthened my resolve to keep working to restore and rebuild my life. While I’m always coy about which method of recovery I have chosen (I don’t wish to promote one over another), I will tell you that my camp alter ego Anita Mann (left) wasn’t coy at all, and — get this — she actually sang live during one of the evening’s entertainments. Alas, neither she nor I sing very well, but the message of recovery is clear, and she shares some funny, wise words with the audience after her song. Watch the clip here, but be kind.

The emotion of “We Were Here,” the documentary about the darkest days of the AIDS epidemic and its effect on a group of gay men, can be felt just by reading the reviews, like the rave it just received in The New York Times. I’m almost nervous to see it because I know the trauma and grief it could summon, but I also know I absolutely must. If you can’t find it playing at a festival or cinema near you, then for goodness sake, go directly to Netflix or some other DVD rental site and put it on your list. I often speak of honoring the past — in fact, my favorite video on this site, “Once, When We Were Heroes,” recounts those days and is always worth another look.

My (healthy?) fixation on repairing my facial lipoatrophy (also known as facial wasting) continues, and I am pleased to report that I have begun treatments with Artefill, the “permanent facial filler” product, under the continued care of Dr. Gerald Pierone in Vero Beach, Florida. My past treatment with other products is well documented, but I’ve got to say that these results are well beyond those of Sculptra or Radiesse, truly. The bad news: Artefill is not approved specifically for lipoatrophy, so there are no patient assistance programs for those of us with HIV, making the treatment expensive (in the thousands of dollars). While I don’t expect many of my fellow HIVers can afford it, I felt compelled to share with you the very positive results.

I am the MC for the annual HIV Poz Cruise Retreat, set for this November 5-12 to set sail from Ft Lauderdale. There was such an abundance of fellowship and acceptance last year that I had to do it again. There are sometimes last-minute rooms and cancellations, so if you would like to check it out be sure to visit the web site. You can also watch my video blog from last year, which gives you a great feel for the event and the fun people aboard. Kudos to the dedicated Paul, a long time AIDS advocate and man living with HIV, who has shepherded the cruises for the last nine years.

Some of the most progressive events for building gay male community and preventing HIV are being developed in the Florida panhandle, of all places. On Monday October 10, I’m honored to be participating in the “Our Gay Generation” forum for gay men in Pensecola, which will explore what it means to be a healthy, satisfied gay man today by looking at our past and rededicating ourselves to one another. Sponsored by the Oasis Community Center (and Butch McKay, the formidable force behind the annual Positive Living conference), the forum transcends political issues like gay marriage, and focuses instead on personal satisfaction, community, and the value of friends. Later in the month, the same group will host a ManReach retreat for 40 gay men at a remote retreat center. Contact Oasis for more information on either event.

Whew! Okay, I’m caught up. Thanks for your patience, my good friends, and please be well.

Mark

Tags: aids, culture, drag, gay, gratitude, hiv, lipo, physician, recovery, Sculptra
Posted in Anita Mann and Acting Gigs, Family and Friends, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 8 Comments »

7 Ways to Save Money on Meds

Tuesday, August 16th, 2011

With all the doctor appointments and wellness activities we engage in, living with HIV/AIDS can be a full-time job. And the truth is, it doesn’t pay very well. We’ve all been feeling the pinch of tough economic times. So I hope you’ll find some savings in this new video blog, “7 Ways to Save Money on Meds.”

Jason King, a pharmacy specialist and patient advocate at AIDS Healthcare Foundation in Ft Lauderdale, was kind enough to give me a tour of their “Out of the Closet” thrift store and then sit down to discuss ways to save money that your pharmacist might not be telling you.

Most of these tips, by the way, can also apply to medications which are not HIV specific. And we have even included a tip just for our HIV-negative friends. I’m an equal opportunity money saver!

I’m amazed at how many people don’t know about co-pay assistance cards, a program in which the pharmaceutical picks up your co-pay costs. It’s a simple program to use without any income restrictions, and you can save up to $400 per year per medication! Fabulous. Your pharmacy or physician should have cards for you, or Google your medication along with “co-pay assistance” and you should find cards or information to print out.

Specialty pharmacies are a smart move these days. They focus on a particular disease, like HIV, but provide a full spectrum of medications like other pharmacies. The difference is usually service: their technicians are trained in HIV and know more about interactions, for instance, and they are more likely to point out savings opportunities like co-pay cards and patient assistance programs.

When I recently chose a new pharmacy, I went to a specialty pharmacy and just asked them, what can you do for me that Walgreens doesn’t? A lot, as it turns out. They offered free delivery and free shipping anywhere in the continental U.S., and they said they would provide free supplements with a prescription from my doctor! I made the switch, and along with my HIV meds, they provide my vitamins and fish oil at no charge. It pays to ask about perks.

AIDS Healthcare Foundation pharmacy isn’t the only HIV specialty pharmacy in town. Others include BioScrip and Commcare, and they will all ship to you if you don’t have one in your area.

I was intrigued by the idea of buying generic meds from out of the country, but kept getting the icks. What if they make these meds in some ratty factory somewhere with no quality control? I mean, ick.

A little research put my mind at ease. The helpful folks at AIDSDrugsOnline.net reminded me that people have been purchasing medications from Canada for decades because of the low cost. And India, which produces most of the generic HIV meds available, is the 2nd largest pharmaceutical industry in the world, with FDA-approved facilities.

And the prices. Wow. No wonder people who are without insurance (or in the doughnut hole) are purchasing their meds this way. And there are many others players in this game, such as Canada Prescriptions Plus. Shop around.)

The laws are vague about the legality of this, but at any rate are not enforced. Generally speaking, it appears that people can purchase up to a 90-day supply of a medication from other countries as long as it is for personal use. If you’re shopping around and want to be sure the manufacturer is legit, visit pharmacychecker.com to do your research.

Compounding pharmacies, like APSMeds.com, are able to create special versions of generic medications in whatever strength or format (pill, capsule, liquid) that your physician requests. And their product is a lot less expensive than you are paying for the medication in its regular form! Since they only deal with generics, this is a tip for medications like testosterone gels or Lipitor or Flomax.

Finally, there are patient assistance programs offered by the pharmaceuticals that you might qualify for. There are doughnut hole programs for people with insurance that cover your meds when you fall into that financial abyss, and other programs for people with no insurance at all. The best resource online to navigate your way through these programs is NeedyMeds.org.

Between the co-pay cards and the supplements provided by my specialty pharmacy, I’ll be saving hundreds of dollars on my medications this year. I hope you’ll find similar savings.

Now, if we could create universal healthcare in the great United States, we would not be scrambling to pay for medications, and people from other countries would stop snickering and shaking their heads at the necessity of this blog posting.

Feel free to share/post/like this posting, in case it might save your friends some money! In the meantime, please be well.

Mark

Tags: aids, help others, hiv, physician
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 10 Comments »

Facebook Put My Life Together Again

Tuesday, August 9th, 2011

Today I accepted the Facebook friend request of someone I knew in high school. We haven’t spoken in more than thirty years. She is married with a load of kids, and God knows why she wants to befriend the scandalous queer who wore knee-high platform boots to the junior dance in our home town of Bossier City, Louisiana.

I did what I always do. I accepted her request and included a link to My Fabulous Disease, labeled as a blog chronicling my life “as an HIV positive gay man in recovery from drug addiction.” Based on past experience, I’m unlikely to hear from her again, and that’s okay.

For most of my life, I’ve kept my social circles far away from one another. The family section never mixed with the gay contingent. These segments were then dissected into those who knew my HIV status and those who did not, which were then divided by whether or not they knew I did comedy drag, and then finally separated into those who knew I did (a lot of) drugs, and those who did not.

When I finally put a stop to my exhausting existence of lies and fakery that accompanied my drug addiction, I knew that in order to live a life of integrity I would need to be the same Mark for every person in my life. No more masks or crafting my personality to suit the audience.

Then I joined Facebook, which allowed me to invite all of these segments into one pool of friendship. My nephew would see my posting about my HIV treatments. My AIDS work colleagues would be treated to videos of me in drag. My friends in recovery would post encouraging words about our shared disease of addiction, and all of this would happily exist on my profile page alongside my nephew’s picture of his baby boy.

Facebook has allowed me to tell the truth again. It has shown me how to be authentic and the same person to everyone in the various corners of my life. Becoming a whole person again cannot be understated. After many years of deceit and hiding out from one group or another, Facebook presented an exercise in transparency that has saved me from the counterfeit personas I relied upon for most of my adult life.

With all the excitement and hype about Google+, I know it’s a format I will never embrace, because it promotes a feature that allows you to separate the people in your life into “circles.” They trumpet this as a real innovation, but it would be a huge step back in my personal development.

I need all the positive structure I can get. Overcoming my addictive nature is still a work in progress, and sometimes my insecurities can still find their way into my Facebook life.

I scan every posted update from hundreds of friends, “liking” with consistent generosity. Anyone who wants to be my friend makes the cut, except for the Eastern bloc hoochie mammas that sometimes come calling. Do they knock on your Facebook door, too? They show far too much boob in their photo and love older men and “hanging out.”

Men on Facebook who show too much boob, well, they mostly get a pass. But beware of those who are always shirtless, and their friends are always shirtless, and so on. We’re not talking “at the beach” pictures, but holding-the-iPhone-aloft-in-front-of-the-bathroom-mirror type pictures. If you can’t ask a friend to take a shirtless picture of you, I figure you must be up to no good.

My OCD still sneaks out, and it adores Facebook. Someone might post a picture and I look at it and then I start browsing their other pictures and one of them has some interesting guy I don’t know and so I click on his profile and check out his pictures and stare at his many friends whom I do not know and carefully scan their photo album of a very nice dinner at a restaurant I have never heard of in a city I’ve never visited, and then notice some fabulous pictures of a birthday party for an adorable complete stranger and decide to look at the pictures of each and every birthday party guest and then I look up and it’s one o’clock in the fucking morning.

These behaviors are sometimes slow to change. I’m working on it. In the meantime, you can always friend me. What you see is exactly who I am.

“Dirty Facebook Logo” design by Hawk Style Design.

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PLUS…

A little sanity may finally be entering the arena of laws and prosecution of people living with HIV for not disclosing their HIV status to partners (even though, in many cases in which people are in jail, there was no transmission and protection was often used). A blog posting at Housing Works reports that Rep. Barbara Lee (D-CA) is introducing a bill that would require a review of all federal and state laws and policies regarding criminalizing people with HIV. This maddening issue was the topic of my conversation with Sean Strub last year, and it’s about damn time that legislative action (of the sensible variety) is being taken. “Thirty-four states and two U.S. territories have statutes that penalize HIV exposure” says the Housing Works piece. “While their supporters claim these policies protect the public health, evidence shows they do more harm than good.”

Tags: Aging, aids, culture, family, gay, help others, recovery
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 15 Comments »

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