HIV Research Catalyst Forum: The Denver Principles

Remember the Denver Principles

   I just got back from a 4 day conference in Baltimore, MD called The HIV Research Catalyst Forum.  This Forum was created by volunteers who have been passionate about HIV Activism, Education and Advocacy since the beginning of this epidemic.  I was really lucky to be accepted by the organizers to go to this conference on a scholarship.  I was equally lucky enough to meet with some amazing activists from around the country who are continuing the fight for HIV/AIDS justice that was started in the early 1980's.  I also got to hear some truly astounding personal stories from people who had to go through the ignorance and intolerance that the government (City, State and Federal) has and continues to do towards people living with HIV/AIDS.  For the next couple of posts, I want to write up what I learned and experienced at the forum and hopefully connect people here in South Central Wisconsin to some amazing advocacy groups in the country.

At the opening dinner to this forum, we got to hear some passionate addresses from current HIV advocates.  I will probably take a part or a whole post to comment on each of them and what they are doing.  The first one I want to mention though is an amazing woman from Philadelphia, PA.

Waheedah Shabazz-El

 I'm going to just post a little bit of her bio from the CHAMP website. 

"Waheedah Shabazz-El, a 55-year-old African American Muslim woman, is a Community Organizer and Trainer with the Community HIV/AIDS Mobilization Project (CHAMP). Waheedah is a retired Postal Worker who was diagnosed with AIDS in 2003. Since her diagnosis, she has become a fervent member of the social justice movement and an AIDS activist, advocate, educator and community organizer. Certified in HIV prevention, she is also an organizer and spokesperson for ACT-UP Philadelphia. Waheedah is a graduate of Project TEACH Outside and Project TEACH, educational advocacy programs at Philadelphia FIGHT. She is employed by Philadelphia FIGHT as an HIV counselor and tester and volunteers as a peer educator. She is an organizer for the Philadelphia County Coalition for Prison Health-Care, an editor of Prison Health newsletter, and a member of the PRHCN (Prison Re-Entry Health-Care Network). She is also a member of the Ryan White Positive Committee for Philadelphia’s Office of HIV Planning."

She talked about how she did not know anything when she went to meetings surrounding clinical trials of HIV treatment.  And she was asked many times from the scientists and researchers who were there if she knew what meetings she was attending and if she really should be there.  She kept coming back anyway and soon began understanding what was being discussed, and in a way accepted as a part of the discussion about these treatment trials.  Her advice was to not let scientists or researchers intimidate you with their language or their degrees.  That HIV clinical trials were affecting people living with HIV and they had every right to be at that table talking about it.  She also brought up something called the Denver Principals.  For those who don't know, in 1983 members of ACTUP got together and came up with these Rights of patients living with HIV.  Here they are:

We condemn attempts to label us as ‘victims,’ a term that implies defeat, and we are only occasionally ‘patients,’ a term that implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’.

RECOMMENDATIONS FOR ALL PEOPLE.

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

RECOMMENDATIONS FOR PEOPLE WITH AIDS.

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.

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

4. Substitute low-risk sexual behaviors for those that could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

RIGHTS OF PEOPLE WITH AIDS.

1. To as full and satisfying sexual and emotional lives as anyone else.

2. To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.

3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.

4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.

5. To die--and to LIVE--in dignity.