My journey as an HIV Advocate started in 1989 when my partner got sick and he received an AIDS diagnosis, and I followed with an HIV diagnosis. I quickly learned how bad HIV stigma was as I had to fight the hospital to get him proper care and his family who abandoned him from fear of getting HIV. In his final days he made me promise to do all I could to help others living with HIV. He died in my arms and this was the hardest thing I ever had to face and I was not sure how long I would live.
After this ordeal, I moved to Portland, Oregon where I got on AZT thanks to the AIDS Drug Assistance Program - which was started in 1987 to help people get access to the medications. I got involved with the HIV community, and worked on "death with dignity" issues as we were all watching friends die daily and wanted to control the way we died instead of the slow painful death we watched friends and loved ones go through. I also did home hospice work and held many friend’s hands and made lots of promises to continue to fight as they died.
I found my niche in HIV public policy early on and worked on physician assisted suicide, and helping to get the Ryan White Care Act passed in 1990 - which included continued funding for ADAP’s. During that time, I found myself getting arrested for protesting a few times...including once naked.
In the mid-nineties, I lost a second partner to the virus right before the Protease Inhibitors, a powerful class of HIV drugs came out and literally brought some people back from death’s doorstep. Meds were getting better and people were not dying as fast and many long-term survivors like myself had to then deal mentally with all the death in our lives. I was even diagnosed with PTSD. Advocacy had to be steered at that point to getting people mental health care and help applying for disability.
As the years passed, I was being recruited to speak at HIV Conferences (including the ADAP Advocacy Association's Annual AIDS Drug Assistance Program Conference, as seen in the photo) and Chair Planning Councils and my advocacy had changed from taking on Federal issues to dealing with State Policy Issues. The biggest one is HIV Criminalization laws that were created in the 80’s and early 90’s. States are slowly changing these laws and I took a crack at changing Tennessee’s laws but the political landscape of the state was too much to pass it. I was able to work with other groups to pass a law to help people with HIV prosecuted under the aggravated prostitution law removed the sex offender list. I also assisted with legalizing syringe service programs in Tennessee.
Finally, we still need to fight to keep ADAP’s strong. I recently found myself needing ADAP when I retired and was transitioning into retirement and Medicare. Sometimes people fall into the gaps and that is why we need to keep ADAP’s strong.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
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