Petrelis Files

Strub: UN HIV Stigma Survey
Needs PWA Voices

Lately I've been consumed with addressing the reinforcement of stigma against people with AIDS, brought about by a recent math model created by ivory tower researchers.

UCLA and UCSF scientists generated much controversy with allegations that PWAs in San Francisco, with the assistance of doctors and caregivers, had created mini-epidemics of drug-resistant strains of HIV.

The researchers intimated complacency from PWAs, and that we needed our cages rattled. Projecting the notion that PWAs were unconcerned by the alleged resistant strains, stigmatized us as selfish Typhoid Marys threatening global public health.

One way to fight back against such institutional stigmatization by researchers and others, came my way this week from my friend Sean Strub. He's surviving and thriving as a person living with HIV, with a long track record in AIDS advocacy on many fronts.

Sean's asking people to take some time and answer a few questions, give a few comments and suggestions, and help the United Nations address AIDS stigma and discrimination. I've done as he asked, and hope my answers and suggestions bring some change.

As important, was getting a few complaints off my chest about AIDS stigma that I see in California. It was productive to take some of my anger over UCLA/UCSF and share it with the UN folks working on AIDS. Surely you can find you own reasons, regardless of your HIV status, to take the survey. It will be of benefit to PWAs worldwide.

Here's Sean's message, followed by a note from the UN representative soliciting participation, and links to the survey in six languages:

I am forwarding this survey to you because, as you know, many of us have been working on trying to integrate more people with HIV in HIV/AIDS policy-making and delivery of services.

Over the years, the voices of those who have the diseases have too-often receded to the background, with terrible consequences for the epidemic.

Any person with HIV and anyone working in some capacity with the epidemic is eligible and encouraged to complete this survey. It takes a few minutes, but it is something meaningful you can do to help advance the issues that are important to us.

I know that every survey is read and counted and, ultimately will have an influence on the final report. Their report could have far-reaching consequences, which is why it is so important that you take a few minutes to complete the survey.

This is the note from the UN representative, with all of the links to the survey in various languages:

Each year, the NGO Delegation to the UNAIDS governing body (called the Programme Coordinating Board or PCB) submits a report to the Board. This is an important opportunity for us to present the unique perspectives of civil society on the developments and issues around the AIDS pandemic.

This year, we anticipate that the June 2010 board meeting will include agenda items such as non-discrimination; men who have sex with men (MSM); and a thematic focus on sexual and reproductive health services linked to HIV.

The Survey is currently also available in Chinese, Portuguese, Spanish, Russian and French. It will soon be made available in Thai, Burmese, Swahili and Arabic. The deadline is March 15, 2010.

Link to English Survey
Link to Portuguese Survey
Link to Russian Survey
Link to Spanish Survey
Link to French Survey
Link to Chinese Survey

Feel free to distribute to your networks.

Evan Collins
Email: evanjcollins (at) gmail (dot) com
North American Delegate,
UNAIDS PCB NGO Delegation