June 5, 1981. Many people who work in the HIV field know its significance: the day when the first AIDS cases were officially reported. Some among us know the date with the immediacy of living with HIV. (Read I Am a Long-term Survivor of HIV, by HRSA's Antigone Dempsey.)
We commemorate those who are living with HIV, and the many who did not survive, on HIV Long-Term Survivors Awareness Day. Looking back on the decades, with so much grief and loss and progress over 40 years, the theme for 2021 is apt: AIDS at 40: Envisioning a Future We Never Imagined.
The Impact of People with HIV
The 1980s were an era of HIV care that was largely happening in hospitals and buddy programs at volunteer-driven groups, some of which managed to grow into what were called AIDS Service Organizations. The work of people with HIV and the compassion of friends was put into legislation that became the Ryan White CARE Act in 1990. Over the next 30 years, the now-named HRSA Ryan White HIV/AIDS Program (RWHAP) continued to be driven by a focus on consumer involvement and leadership: in planning and working in HIV care programs as peer educators, outreach workers, and more.
See also Living History, with a timeline, voices and videos on the RWHAP
New Initiatives Supporting Consumer Involvement
As new generations engage in HIV care work, HRSA has funded new initiatives to provide training to people with HIV. Two new project just getting started including:
- ELEVATE for People with HIV, which will prepared people with HIV to meaningfully engage and take on leadership roles in planning bodies, advocacy actions, and the HIV workforce.
- ESCALATE: Ending Stigma through Collaboration and Lifting All to Empowerment will focus on reducing HIV stigma through training participants in EHE jurisdictions.
Established Projects Supporting People with HIV
Existing and earlier projects are summarized in People with HIV & Community Involvement. Highlights:
- Planning CHATT (Planning Community HIV/AIDS Technical Assistance and Training), which has been at work for several years to build the capacity of RWHAP planning bodies, including strengthening consumer engagement. Among their resources are the Training Guide for RWHAP Part A Planning Councils/Planning Bodies: A Member’s First Planning Cycle and the Planning Council Primer. Both are updates from training materials first developed in the 1990s.
- Using Community Health Workers to Improve Linkage and Retention in HIV Care, with guides and webinars to help clinics integrate community health workers into an HIV multidisciplinary team model.
- DEII (Dissemination of Evidence-Informed Interventions) developed a series of technical resources to replicate models, including peers and patient navigators to support women of color with HIV.
- The Center for Quality Improvement and Innovation supports RWHAP agencies on making quality improvements in HIV care and includes in their work consumer training, like Training for Consumers on Quality Plus.
- The ACE TA Center (Access, Care, and Engagement Technical Assistance) helps agencies navigate the changing health care landscape and helps people with HIV access and use their health coverage. ACE has developed resources for consumers to explain health insurance and using health coverage to maximize health outcomes.