For more than two decades, Ryan White HIV/AIDS Program grantees have rapidly implemented life-saving advances in HIV care and treatment in their clinics, under the guidance of the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB). The Ryan White HIV/AIDS Program is the payor of last resort for poor, uninsured, or underinsured HIV-positive people in the United States. But grantees are far more than gap-fillers: They are extraordinary for both the range and quality of services they offer. Years of dedication and hard work have built a medical home for people living with HIV/AIDS (PLWHA) who have nowhere else to turn.
PLWHA often face multiple hardships, such as poverty, unstable housing, incarceration, and stigma as well as addiction and other medical and psychiatric comorbidities. From the beginning, HRSA recognized and developed the capacity to address the medical and psychosocial needs of PLWHA. Ryan White–funded programs provide patient-centered HIV primary care, medications, mental health care, addiction treatment, case management, transportation, and other ancillary services proven to be essential for keeping people in care.4,5 As Brian Feit, public health analyst in HAB’s Technical Assistance Branch, notes, “We built a system that would hold people as they got sicker. Lo and behold, it was the system we needed to keep people alive.”
Although the program itself is administered by HAB, the Federal Government has always made community involvement a cornerstone of its implementation at the State and local levels. Planning Councils and Consortia, for example, are comprised in part by consumers who reflect the demographics of the local epidemic. Participation of PLWHA is essential for identifying and prioritizing community needs; making decisions to allocate funds; and creating short- and long-term plans for service coordination, delivery, and oversight.
HIV Treatment Timeline
“At the beginning of the epidemic, there was no treatment. We didn’t talk much about the future,” recalls Linda Frank, a public health professor and HRSA AIDS Education and Training Center (AETC) faculty member. “We were just watching people die.” Both the prognosis and the standard of care for HIV infection have changed since those early years. Antiretroviral therapy (ART) has dramatically lowered HIV-related morbidity and mortality in the United States.6,7,8
By 2006, highly active ART (HAART) had increased life expectancy among PLWHA in the United States by so much that the combined total is equivalent to 3 million years of life.9 But when the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (also called the Ryan White HIV/AIDS Program) was enacted in 1990, the only approved treatment for HIV/AIDS infection was a single antiretroviral drug, AZT (zidovudine). Clinicians fought to stave off opportunistic infections and administered palliative care. “When I started working as a nurse in 1984, all you could do for people with AIDS was to help them die as comfortably as possible,” says Diana Travieso Palow, chief of HAB’s HIV Education Branch in the Division of Training and Technical Assistance. “People have forgotten,” she says.
Research efforts had yet to lead to better treatments or a cure for HIV/AIDS, but basic science began to bear fruit. Researchers were learning more about HIV and AIDS. They discovered that instead of remaining dormant for approximately a decade, HIV was actively replicating in infected lymph nodes and gradually depleting the immune system through several different mechanisms.10
* This essay is not meant to be an exhaustive summary of all HIV medications but rather a discussion about the Health Resources and Services Administration’s HIV/AIDS Bureau in the context of major HIV/AIDS treatment advances.