Wednesday, September 28, 2011

SF HIV Panel to PWAs: Drop Dead

[UPDATES: I've heard from NAPWA and SF PWA leader Gary Virginia. Scroll down for the new info.]

This coming Friday, there's an AIDS Inc town hall funded by Merck and cosponsored by lots of public health departments and service organizations at City Hall, and not one of the panelists is identified as a person living with HIV. The scheduled speakers hail from the industry, and are decent folks whom I generally respect, but we also need to have open PWAs on the panel. It's inadequate to only have PWA voices from the floor.

This sham community organizing is being executed by the Road to AIDS 2012 group that shares no info on whether it's a nonprofit or private entity. The forum needs to be zapped.

In the dark and deadly early days of the epidemic, a group of brave folks living with AIDS gathered in Colorado to strategize for their survival, and a key outcome were the Denver Principles. They called for many empowerment tools for PWAs including this crucial demand:

Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

The National Association of PWAs, a poor excuse of an advocacy group for a vulnerable population, posts the Denver Principles on their site but it's window dressing because they do so little pushing on AIDS Inc to live up to the principles.

I emailed my concerns and this note from one of the handsomely paid HIV negative consultants behind the town hall to several folks at NAPWA, asking them to weigh in on the absence of PWAs and didn't hear back from NAPWA. This came from consultant A. Toni Young of Road to AIDS 2012:

We have not asked the HIV status of panelist nor will we. Road to AIDS 2012 is being staged to give communities an opportunity to engage with local federal and state decision-makers. Panelist have been invited based on their ability to answer questions from the community given the role each has played or is playing in the implementation of the NHAS [National HIV/AIDS Strategy]. We are providing an opportunity for all people specifically People living with HIV and AIDS to have access to those decision-makers in their community. Limiting this to the perspective of one person on the panel would be counter to our goal. The PLWHA of the Bay Area are diverse. We want all those people and opinions reflected in this conversation not just one panelist perspective.

Hogwash. They're fine about just single panelists from local or federal health agencies, but have no room for a PWA? What an insult at any time, but especially so a few months after AIDS Inc putting on a great show marking the 30th anniversary of the first AIDS cases in America as reported by the Centers for Disease Control and Prevention.

Much of the AIDS at 30 hoopla by the same folks organizing the panel and those on it, was self-congratulatory about the supposed vital role of people with AIDS at service agencies and within government circles.

Here's the list of names of the HIV negative panelists. Do they give a damn about the Denver Principles?:

Judith D. Auerbach, PhD
Vice President, Research & Evaluation, San Francisco AIDS Foundation

Grant Colfax, MD
Director of HIV Prevention and Research, San Francisco Department of Public Health

Charles Fann
Community Co-Chair for the San Francisco HPPC and Health Promotions Program Manager at Tenderloin Health

Andrew Forsyth, PhD
Department of Health and Human Services, Office of the Deputy Assistant Secretary for Health/Infectious Diseases,

Sharyn Grayson
Co-Chair at Collaborative Community Planning Council - Oakland TGA

Kabir Hypolite, PhD
Director, Office of AIDS Administration, Alameda County

Marsha A. Martin, DSW
Director, Get Screened Oakland

Herb K. Schultz
Regional Director, U.S. Department of Health and Human Services, Region IX


Longtime gay San Francisco leader and a person with AIDS, Gary Virginia, posted an important comment calling on the organizers of tomorrow's forum to include a PWA. I believe Gary would be an excellent addition to the roster of speakers, and I hope the organizers wise about this matter.

On Thursday afternoon, Peter Kronenberg, communications director for NAPWA, shared this note with me:

Sorry we couldn’t get back to you sooner. Our Sunday through Tuesday was jam-packed with National Gay Men’s HIV/AIDS Awareness Day events, and yesterday we were pretty busy wrapping up.

We agree that it’s surprising to see San Francisco organize an event of this kind without any PLWHA on the panel. It’s their event, though, and we can’t tell them what to do. Your best approach might be to contact the organizers directly and raise the issue with them. Wouldn’t surprise me a bit if they said, Yipes, how did we not think about that?

While it's good to have this communication from NAPWA, I am so disappointed, again, that it absolves itself of getting involved with making sure the town hall tomorrow night adheres to the Denver Principles and the demand to include PWAs on panels. It's so sad that NAPWA won't lift a finger to contact the organizer and nudge them to do the right thing.

In my response to Peter and colleagues at NAPWA, I express frustration that they do so little public pushing on AIDS Inc to embrace not just the Denver Principles but the voices and wisdom of people with HIV and AIDS at every level of decision-making and all public organizing efforts.

NAPWA should be doing more for PWAs and I'm calling upon them to stand up for PWA inclusion on this San Francisco panel.


Gary Virginia, PWA said...

Since 1996 I have been a community activist and fund raiser for HIV/AIDS causes. I always identify myself in public as being a Person with HIV since 1988 and full-blown AIDS in 1995. This is important to help take the stigma off of this disease. My words often empower people to take the shame off the disease and to encourage them to take control of their life.

Keeping PWA/HIV unidentified on a panel like this counters everything I understand in combatting any illness or disease.

Look at the empowerment behind the Susan G. Komen Walk for Breast Cancer annually. Rallying people to talk publicly about prevention, treatment, cures helps everyone.

This panel has time to make a necessary change. There are hundreds of PWAs who are willing to be public about their status and we truly do have something UNIQUE to offer. We are living with the disease.

Unknown said...

hi gary,

thanks so much for speaking up on this matter. i'll make sure the organizers are aware of your views and call for changing the composition of the panel for tomorrow night.