December 1 is World AIDS Day. The 2023 theme is World AIDS Day 35: Remember and Commit.
The 35 is a reference to the years since the first World AIDS Day in 1988. Two years later, in 1990, the Ryan White CARE Act was enacted, structured in part upon earlier community-driven AIDS service work to create a framework for a national network of local, state, and national care programs to address varied HIV care needs.
Subsequent work across the decades, by HRSA's HIV/AIDS Bureau and over 600 Ryan White agencies, built today's Ryan White HIV/AIDS Program (RWHAP). Achievements are most notably summarized in viral suppression rates for RWHAP clients. In 2021, 89.7% of RWHAP clients receiving RWHAP medical care were virally suppressed, according to the RWHAP Annual Client-Level Data Report, 2021 (HRSA, 2022).
What follows is a summary of select benchmarks of the work of the RWHAP over the past 35-plus years. Highlights are drawn from earlier blogs and reports, featured in the sidebar.
Years before the HIV/AIDS Bureau was created, HRSA's HIV/AIDS programs were scattered across multiple bureaus within the agency. In 1986, demonstration projects on HIV/AIDS care programs were established in a small number of AIDS epicenters in large cities. Programs were largely focused on end-of-life care given the focus on managing a then fatal disease. Projects evolved to become models for Title I metropolitan HIV/AIDS service programs (retitled as Part A under a reauthorization) as well as a framework for the SPNS demonstration grant program. HRSA pediatric HIV care projects (1988) and community-based HIV programs in lower incidence cities (1989) later became the framework for, respectively, Titles IV and III (later, as Parts D and C). The HRSA AZT drug distribution program was started in 1987, shortly after FDA approval of the first AIDS antiretroviral drug, and later became the AIDS Drug Assistance Program (ADAP).
The Ryan White CARE Act was enacted in 1990, with distribution of its first grants in 1991 under a quickly crafted but robust community planning process at the local and state levels. Over the coming decade, HRSA created a new HIV clinical training program (1992), later to become of the AIDS Education and Training Centers (AETCs). HRSA also reorganized HIV programs over the decade to create a centralized HIV/AIDS Bureau administrative structure to better manage HIV care programming as it evolved and dramatically improved. In 1994, evidence emerged on the efficacy of AZT in greatly reducing HIV perinatal transmission. In 1995-1996, everything changed. Early combination antiretroviral regimens came with toxicities and side effects but they worked. Planning adjustments started to focus on the care/prevention continuum. Finally, recognition of the disproportionate impact of HIV on African Americans as well as Latinos resulted in new Minority AIDS Initiative funding (1989) and additional work to increase RWHAP funding toward hard hit minority populations.
Read the Timeline in A Living History.
The first decade of the new millennium saw refinements and major adjustments in HIV care programming. The overall focus was to restructure funding and programs toward ever-improving HIV treatments and the primary medical care necessary to engage people in care; guidance for agencies to adopt clinical quality management to improve operations; emergence of the Global AIDS Program and adapting Ryan White insights internationally; refinements in identifying unmet needs--an ongoing process that continued into the next decade; and further exploration to find new models of care to engage and retain persons with HIV in care, particularly those hardest-to-reach and those dealing with co-morbidities. Funding also expanded to reach smaller cities. In summary, work over the decade set the foundation for what was to come into focus in the next.
Read Bi-directional Lessons Learned Along the HIV Treatment Cascade Between the RWHAP and PEPFAR and access TA projects for the RWHAP and look back at past TA initiatives.
In many ways, these years are when the pieces came together. The RWHAP client level data system was finally launched and released its first data in 2010. Clinical quality management continued to evolve, with new tools and focus areas, from addressing disparities to advanced training. A renewed focus was placed on planning: integrated planning and basic training on community planning along with ongoing refinements in preparation of epidemiologic profiles and care/prevention planning. Multiple Special Projects of National Significance (SPNS) initiatives were funded to explore HIV care issues in depth (e.g., persons co-infected with hepatitis C and HIV; transgender women; gay/bisexual Black men; buprenorphine; homeless populations). Meanwhile, studies emerged, demonstrating that persons who were virally suppressed could not sexually transmit HIV to an HIV-negative partner, creating a new rationale to link HIV care and HIV prevention planning. And, in another major shift, the vision to End the HIV Epidemic resulted in focused funding, programming, and technical assistance for high incidence cities and states.
Today, the results of decades of work are evident in RWHAP viral suppression rates and the multiple models of effective care delivery that have been developed over the decades through SPNS and other Ryan White work.