Prevention and Policy
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 »
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.â€
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 | 9 Comments »
Outliving My Father
Tuesday, July 26th, 2011
The descriptions of his decline, in whispered calls from back home, had a dreadfully familiar feel to them. Weight loss at a frightful pace. Losing interest in the world. Suddenly looking very old indeed. Most gay men of a certain age have heard those words, have seen the patient, have buried the friend. This case was different, though. It wasn’t AIDS, it was cancer.
And the patient was Dad.
The disease had swept rapidly through my father since his initial diagnosis. The inevitable was approaching, but the territory was completely unfamiliar to my family, who hadn’t seen a death in more than 30 years. They were about to get a tour through hell. I have traveled it many times.
“Well, he’s lost a lot of weight,†Mom said on the phone, “and sometimes, he will say the same thing more than once. That does scare me a bit.†You think you’re scared now, I thought.
“Have you checked into hospice care?†I asked. It’s exhausting for a man in his thirties to care for a dying lover. Mom was 75.
“Well no, honey, I thought we could wait on that…†Her voice drifted.
Something inside me went on AIDS auto pilot.
“Call the doctor and ask about hospice care,†I practically ordered. “They can help avoid another hospital stay, Mom.†The family would do anything to prevent that scene again.
I flew home within days. Still no hospice care. My family was stunned into inaction, it seemed. Had anyone spoken to dad about getting nursing help, about his illness, about how everyone was dazed into speechlessness? Heads shook slowly, eyes looked downward.
After 15 years living with my own HIV infection, my medical choices — powers of attorney, “no resuscitation†instructions — had long been settled. Mom was uncomfortable with the decisions, much less the reality.
On my second day home, I found myself alone with Dad. He was bundled on the sofa, and whatever his thoughts, they seldom found words. His condition looked hauntingly familiar, leading me to a nonsensical conclusion. “Dad has AIDS,†my mind insisted.
“Can I talk to you about what’s going on?†I asked him.
“Yeah..?†he said weakly.
“This is really horrible Dad, and everyone is freaked out and doesn’t know how to act.†His eyes never left me. “Mom is afraid to ask for help. You need a nurse. Do you think that’s okay?â€
“Well… yes. I do.†He meant it. “Your mother… your mother works very hard.†I took his hand. “This is hard for your mother, I think…†he continued. “Your mother and I, we are one mind, together. One mind.â€
I had never heard anything so romantic from my father. He saw it in my face, and he found the sadness, too.
“Don’t worry,†he said, and his hand tightened around mine. “It’s okay. I’m all right. This is all right…â€
I wanted to say everything at once. Every declaration of love I had for my father, the retired Colonel who loved his family fiercely, laughed heartily, and equated only happiness with success.
“I will talk about you my whole life,†I said. “All the stories, all the things you’ve done for us… but how do I explain you to anyone?†My voice choked, and my attempt to properly organize my father’s last days was awash in unexpected tears.
I looked up and was stunned to see damp eyes staring back at my own. A tear escaped and rolled tentatively down and across his cheek, as if unsure of the path, so alien was the terrain.
We began words and abandoned them, floating silently in a moment I hoped could delay the inevitable. I thanked God for a gift that, in the distorted world of AIDS, I had wanted so badly over the years. I would outlive my father.
Only after having collected the courage before to say goodbye, to realize the fear and talk about it anyway, did I have the strength to address it with my dad.
This is not a story about AIDS. But it is a story because of it.
(This was originally published in The Advocate on May 22, 2001, but has never been posted to my blog. Thanks for letting me share it with you now.)
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PLUS…
In 2000, when Jo Jowett found five children dying of AIDS in a bare room in Romania, she knew she had found her life’s mission. She established Love Light Romania, providing services and end-of-life care to people living with AIDS throughout the area, and if this sounds like dire work, wait until you see the stark beauty of the brief videos created to highlight their services. Told through gorgeous photography and voice over, the first video is Jo with one young man in his last days, as she expresses her devotion to him and explains how the program began. My other favorite is of Marius, a Romanian man very much alive today as a result of loving care (he’s even friended me on Facebook!). The images of his life in Romania as a man with HIV are beautiful and unforgettable.
Do you ever wonder what exactly all that blood is for, when the draw it for your lab work? The dizzying assortment of tests and numbers give me a headache. Lucky for us, D. Gregory Smith has sorted it all out for us in a terrific piece on the Bilerico Project about all the most common labs tests for HIV patients (and trust me, it’s an exhaustive list). It’s a simple primer, printable and ready to take along to your next appointment, and staying informed like this has all sorts of benefits, according to Gregory: “…a proactive stance by a patient is more likely to decrease feelings of depression, helplessness and fear, and increase feelings of strength, health and well-being.” Check out his excellent guide.
For those of you keeping score of the Pre-Exposure Prophylaxis (PrEP) debate (whether or not we should embrace the notion of people taking meds prior to risk behavior, as a prevention tool) the latest points go to the pro-PrEP camp. Last week, Regan Hofmann’s searing blog post on Poz.com dismissed PrEP as an overly expensive pipe dream. But this week, Project Inform’s Director of Research Advocacy, David Evans (right), made his inaugural post on Poz.com by countering that, although he agrees with much of Hofmann’s thinking, there may be ways to make PrEP affordable and widely available, and these avenues are worth exploring. Among his many compelling arguments for PrEP, David took offense at Hofmann referring to PrEP as “a profit-driven sex toy for rick Westerners.” He responds, “Whether intended or not, this statement implies that some people in whom PrEP might actually be appropriate (can she possibly mean gay white party boys?) are somehow less deserving of this tool than others.”
Tags: family, gratitude, help others
Posted in Books and Writings, Family and Friends, My Fabulous Disease, Prevention and Policy | 12 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 »
The Dirty Little Secret of Gay Men and Meth
Monday, June 20th, 2011
How addiction to crystal methamphetamine is threatening the gay community’s long struggle to turn a corner on the AIDS epidemic.
I really shouldn’t be trusted. That’s the problem with drug addicts like me. We’ve protected our addiction through a myriad of lies and manipulations for so long that being truly honest again is like learning a foreign language from scratch. So when, at long last, my recovery has convinced me that honesty is the only thing that can save my life, I shouldn’t be surprised that my friends are reluctant to believe me.
Their skepticism is well founded. My drug addiction perverted every value I hold dear, and truthfulness was the first to be abandoned. But becoming a habitual liar was only the beginning. As a gay man I worked tirelessly through the 1980’s directing AIDS agencies and advocating HIV education. Despair was a daily companion, and I witnessed the death of friends in manners too gruesome to be described. When I became HIV positive during those early years, every loss of a friend, every visit to intensive care, was like watching my own morbid future.
But once my addiction to crystal methamphetamine took hold by the late 1990’s, caring for my community or even myself had become unaffordable luxuries. The drug, a common presence on the dance floors I once enjoyed, had tightened its hold on me. I was no longer satisfied with occasional weekend use and pursued meth with a vigor unmatched by my devotion to AIDS causes.
This onetime HIV educator became a selfish addict who engaged in perilous drug deals and even riskier sex. The sad irony escaped me, however, as I continued down my destructive path, even contracting Hepatitis C through needles and enduring chemotherapy to treat it. All the while, my addiction raged on.
My experience isn’t unique and widespread meth abuse has been brewing in other populations for some time. But something about its peculiar grip on gay men feels all too familiar, like a dreadful echo of what we suffered a generation ago. And the implications have me worried.
Most of my peers remember what it was like in the early 1980’s, when friends stopped calling or simply died over the weekend. The nightclubs were cloaked in sadness and had a vaguely sinister vibe. Empty desks at work meant someone was mysteriously sick again. During those years of “gay cancer,†we were too petrified to acknowledge the coming storm.
Today those ominous signs have returned, along with the helpless wish that things will improve if only we don’t speak too loudly about it. But rather than AIDS picking off my friends with random cruelty, meth addiction is the culprit. And this time, it is unlikely our community emergency will have ribbons and walk-a-thons or attract research dollars. Society’s sympathy for men dying from drugs is quantitatively less than dying of a sexually transmitted disease. This really is a plague of our own design.
Recovery centers are teeming with gay men battling meth addiction, and the drug has a very tight, culturally specific hold on them. It has surpassed other illegal substances as the drug of choice among gay users. There is something about the drug’s mystique as a sexual liberator that appeals to men who are so often judged by their sexuality. Just as I once did, countless men are abandoning their relationships, their careers and their personal dignity in pursuit of the insidious thrill the drug promises and never delivers.
And meth appears to be mocking my community’s long struggle to turn a corner on the AIDS epidemic. HIV testing sites claim that meth users are five times more likely to test positive for the virus than non-users.
How to combat the growing threat has this activist at a loss. Gay men know we had compelling prevention campaigns for HIV in the early days. They were called funerals. But changing an addict’s behavior is a much more ambitious challenge than changing basic sexual practices.
It was my goal to bring attention to this crisis when I agreed to appear in a recent documentary about gay men and methamphetamine (Todd Ahlberg’s startling “Methâ€). In the film, I represent the voice of reason, the recovering addict remarking on what a sad scourge the drug has become. Only after the documentary was produced did I admit to anyone that I had relapsed prior to filming and had stopped using meth only hours before the camera crew arrived. Once again, my actions trumped my ideals.
It has been baffling to find myself literally saying one thing and doing another. The facts don’t lie: I have been working towards recovery for five years and my last relapse was only four months ago. The eight years I spend addicted to meth will leave scars. Thank God for the recovering addicts I have met along the way, who have shown me that long term success is possible if I will just “get honest†and hold myself accountable. My personal survival is the job at hand.
That’s tough for a former community leader to accept. I want to sound the alarm, organize a response, and join the growing chorus of gay men shedding light on our shameful secret. But how can I urge others to practice honesty when it has eluded me again and again? And what did the AIDS crisis teach me, what did the promises to honor the lives of so many dead friends mean, when I rewarded my miraculous survival by sticking needles in my arm?
I better sit this one out. The preciousness of life itself, and my own in particular, is a lesson I should have learned while caring for my friends dying of AIDS. It has taken a battle with an equally cunning adversary for that lesson to finally sink in.
(This piece appeared on Newsweek.com on November 28, 2007. My struggle with crystal methamphetamine continued, until finally getting clean and sober in recovery on January 1, 2009. — Mark)
Tags: culture, gay, meth, physician, recovery, Sexuality
Posted in Books and Writings, Gay Life, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 3 Comments »