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Surviving AIDS and Stigma by Following The Denver Principles

by Michael  Petrelis
EDGE Media Network Contributor
Friday Dec 1, 2017

Every morning, I make an important contribution toward fighting AIDS when I wake up and take my cocktail. Becoming a long-term HIV survivor began on the day I was infected in 1985 when we had no treatments, and my commitment to staying alive as long as possible started when the doctor informed me of my AIDS diagnosis.

As someone who is part of the ACT UP generation, and attended (and sometimes disrupted) scientific conferences and hundreds of activist meetings plotting demonstrations to get our demands on the news or to capture a politician's attention, I more than deserve the pills I take. I directly helped get the AIDS drugs developed and into bodies, including my own.

Over the years, surviving (and most days thriving) with AIDS has evolved. A few things have remained constant.

I do everything within my power to not get sick or have an infection flare-up. Some examples of what that means: I get a flu vaccination in August, the start of the flu season and build up immunity to the flu. I eat a healthy and balanced diet of mostly plant-based foods and grains, and keep meat off my plate. And I get daily exercise and hit the YMCA two to three times weekly.

At the first signs of a health challenge, I make notes of what's going wrong and if a problem persists, I don't wait to reach out to a healthcare professional or head to the emergency room. I am privileged to have Medicare and Medi-Cal, public health insurance that allows me to take advantage of not only in-person appointments with doctors, but also to get advice over the phone or via email.

And yet despite all these benefits I have living in San Francisco -- one of the most enlightened cities when it comes to supporting people with AIDS -- I still must contend with stigma.

For instance, because of California's strict HIV confidentiality laws, I cannot access my HIV viral load results after a blood draw. All other medical information about my care through various UCSF programs, related to being poz or other medical conditions, I can access with a few clicks through the university's secure electronic communication system.

However, I must specially request my viral load numbers before they are shared with me. There is no other health issue that requires special steps before a patient can get their numbers. Such HIV exceptionalism is a form of stigma. I should be able to access all of my medical info without placing additional burdens on me.

I recently had to challenge the American Foundation for AIDS Research, amfAR, over their lack of a publicly-identified person living with HIV on their panels for their annual HIV Cure Summit, which is held on a UCSF campus.

How did we get to the point, in San Francisco of all cities, where two major institutions collaborate on an important annual gathering about the cure for AIDS, an issue of mighty concern to poz folks, and no openly HIV-positive person is a featured participant?

After expressing my concerns to amfAR, their vice president for communications, AnnMari Shannahan, checked with the community member on the panel, Jeff Taylor, and he agreed to be identified as poz. Turns out there were two other summit speakers, Loren Jones and Rob Newells, who are living with HIV and their identification in publicity materials was changed to reflect this.

A total of three poz folks, and not one of them thought it vital that they come out of the HIV closet for the summit's publicity. What's up with that?

The self-empowerment Denver Principles of 1983 made the following recommendation for people with AIDS: "Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge."

The amfAR and UCSF organizers and the poz participants should have incorporated this crucial recommendation from the beginning of planning the summit. It should not take me publicly scolding the organizers on social media to include poz folks and to clearly inform readers of our participation.

It was mildly depressing having to advocate for inclusion of poz voices. The invisibility reinforced shame and stigma, two things harmful to my wellness.

Even more outrageous, considering the topic of the meeting, was this talk across the country last year, held at the City University of New York's Center for LGBTQ Studies. A panel was convened titled "Shifting the Stigma of HIV/AIDS" and here is the list of speakers and their identifications and affiliations:

"Steven Thrasher (Writer-at-Large for Guardian US and Henry M. MacCracken doctoral fellow in the department of Social and Cultural Analysis at New York University), Linda Villarosa (Author, Former Editor at the New York Times and Director of the Journalism Program at The City College of New York), Viviane Namaste (Concordia University Research Chair in HIV/AIDS) and Ian Bradley Perrin (HIV/AIDS Activist, Advocate, and Policy Analyst) discuss the stigma surrounding HIV and AIDS in a panel moderated by Sarah Schulman (Author, HIV/AIDS Historian)."

If there was a poz member on the panel, the publicity failed to mention it. The Denver Principles are as crucial today as when they were first adopted at the start of the AIDS epidemic. CUNY could have minimized stigma by simply following those principles.

As I age, surviving AIDS and stigma requires a cocktail of strategies -- from adherence to drug regimens, a healthy diet and regular exercise, access to health care -- to challenging policies and institutions.

On World AIDS Day 2017, I recommit myself to my survival. The best way I know how to fight AIDS!

Michael Petrelis is a writer and community organizer based in San Francisco, and is the life-mate of Michael E. Merrigan. He was a co-founder of ACT UP in 1987.


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