There we were, a delegation PWA’s from ACT-UP Philly and Proyecto Sol along with our supporters from Action AIDS and the Office of HIV Planning, representing the state of Pennsylvania at the most important AIDSWatch in history. The AIDSWatch that may very well identify the cornerstones for the first National AIDS Strategy (NAS) to fight AIDS by reducing the incidence of HIV, and increasing access to care through healthcare reform.
AIDSWatch, the largest annual constituent-based Federal HIV/AIDS advocacy and education event in the U.S. Participants include people living with HIV and AIDS, their families, friends, care providers, and other advocates. AIDSWatch is a project of the National Association of People with AIDS (NAPWA).
The AIDSWatch platform this year was developed with the help of ACT-UP Philly. Through intensive discussion on conference calls with NAPWA’s Vice President for Federal Government Affairs Director Kali Lindsey we came to a consensus for a platform of powerful demands that not only addressed the NAS but challenged our law makers to focus on concerns that could be addressed outside of the NAS.
Many of us were able to painfully articulate our personal stories on being homeless, dealing with violence, IDU drug use, incarceration and other addictions. We were also able to joyfully share how we were able to overcome these challenges as a direct result of federal and state funded programs that were available to us, when we most need them, when we were newly diagnosed.
Some us were able to share our fears that our grandchildren (three generations) away may contract HIV if not given the honest accurate information about prevention. Others were able to describe their feelings of desperation when they are forced to choose between buying groceries for the month or paying exorbitant co-pays for life saving medications that would treat their HIV and associated conditions.
For many people in our delegation it was their very first time at AIDSWatch and they didn’t know what to expect. I saw their eyes swell over with tears, their faces wet with wonderment and gratification as an editor of POZ magazine read The Denver Principles with passion and enthusiasm. I heard them make commitments to return next year to represent the People with HIV/AIDS in the Pa. region as they grasped the importance of their spiritual and physical presence in the space. We felt a sense of our own power
I believe one of the major highlights for the Pennsylvania delegation at AIDSWatch 2009 was seeing Senator Arlen Specter and his wife, in his Senatorial Office, only minutes before he was off to the press conference with President Obama where he would make his historical announcement that he would change parties from Republican to Democratic.
AIDSWatch is an exercise in empowerment. It is an amazing opportunity that helps to develop the next generation of leaders who are HIV Positive. We have a voice it is the voice of PWA’s. Our voices echoed throughout Capitol Hill, we need a National AIDS Strategy, and we can hardly wait.
AIDSWatch 2009 Platform/Demands
Health Care Reform which must include: (But not limited to)
- Elimination of the two year Medicare waiting period for people with disabilities.
- Protect Dual Eligible Medicaid/Medicare (Part D) beneficiaries facing doughnut hole coverage gaps by allowing ADAP (AIDS Drug Assistance Program) expenditures to be counted as TrOOP, (True Out of Pocket Spending.
- Strengthen and preserve Ryan White Programs by supporting the authorization of a three year extension of the program before it expires on Sept. 30, 2009.
- Ryan White Programs: Increase overall allocations in the amount of $577.8 to increase accessibility to care and treatment for persons living with HIV.
- Support the ETHA (Early Treatment for HIV ACT) that would give states the option of amending their Medicaid eligibility requirements to extend coverage to Pre- Disabled poor and low income people living with HIV. ***Congressman Chaka Fattah (of all the congressional visits) had already signed on to extend Ryan White programs and ETHA.
Prevention which must include: (But not limited to)
- Elimination of Abstinence Only Education Programs and Promote Evidenced Based Interventions.
- Support passage of the REAL ACT (the Responsible Education About Life) that would develop age appropriate programs around relationships, dating, violence and communications skills.
- Lift the ban on Federal Funding for Syringe Exchange Programs (Serrano House Bill 79)
- HOPWA (Housing Opportunities for PWA’s) allocations at $50 Million
Other Allocation Demands:
- SAMHSA (Substance Abuse & Mental Health Services Agency) $445 Million Increase
- Funding for AIDS Research in the US through the NIH (national Institutes of Health) $500 Million Increase.
- Minority AIDS Initiative (MIA) $200.5Million Increase
- HIV Prevention Education for CDC $878 Million Increase
- The REAL ACT $50 Million in grants