The Evolution of Ryan White HIV/Care
HIV care stands nearly alone in terms of the speed with which a deadly disease became a chronic condition with the advent of life-saving antiretrovirals in the mid-1990s. I began my training before this miracle of medicine transpired. It was a desperate time in the summer of 1990 in San Francisco. During my first three months on the wards, I had diagnosed 25 people with PCP,pneumocystis carinii pneumonia, mostly young gay men who were soon to die. Five years later, just a few months after the release of antiretroviral medication in late 1995 and early 1996, death rates from AIDS plummeted in the U.S. This major medical advance was able to quickly spread, reaching the most medically vulnerable populations, in part due to the infrastructure and care system developed through the Ryan White HIV/AIDS Program.
These advances are emblematic of the Ryan White HIV/AIDS Program HIV care evolution over the past 26 years: an environment of constant change given direction by a foundation of stability based on principles of patient-centered care and community-based planning.
Foundation of ChangeJust a few months after I began my internal medicine training in San Francisco, the Ryan White Comprehensive AIDS Resources EmergencyExit Disclaimer Act was passed, and, across the country, a small band of federal staff within the federal government’s Health Resources and Services Administration (HRSA) began putting in incredible hours to put this new program in place. They worked with communities across the U.S. to quickly expand programs already existing on the ground and to develop new ones to serve the needs of those hardest hit by the HIV epidemic. Many of the leaders were members of AIDS Service Organizations that emerged from volunteerism and compassion. They adjusted over time, becoming professional support service and care agencies on their journey toward evolving an increasingly medical model as effective treatments emerged.
The need for constant evolution of this strong foundation continues to define the work of the Ryan White HIV/AIDS Program, which I lead within HRSA at the Department of Health and Human Services (HHS). Together, change and stability provide a framework that makes possible the success being seen by thousands of agencies and staff who care for approximately a half million individuals each year, which is a little over half of all people in the U.S. diagnosed with HIV. The Ryan White HIV/AIDS Program was developed as a safety net for people who could not afford to access HIV care. While the patients are a diverse mix, the program serves predominately low-income people living with HIV. HRSA data show that over 64% have incomes less than 100% of the federal poverty level (FPL), while 90% earn less than 250% of FPL. Two-thirds of our patients are from racial and ethnic minority groups.
The Results are SignificantThis is what success looks like. Ryan White HIV/AIDS Program patients have achieved retention in care rates (80%) and viral suppression rates (81%) that far exceed national averages, according to our client-level data. The theme is “Forward Momentum: Accelerating Access. Optimizing Care. Transforming Public Health.” More than 2,400 individuals and 600 agencies will convene to share ideas on what makes this medical and support services model work for our patient population, in support the National HIV/AIDS Strategy’s goals of reducing new infections, reducing disparities, and improving access without stigma and discrimination.
The Foundation for Better OutcomesAs people with HIV live longer, healthier lives, the demand for services is growing. As programs work to meet this demand, the focus remains on the Ryan White HIV/AIDS Program fundamentals. These critical pieces bear outlining:
- Guidelines have been developed to guide practitioners in serving key populations and service needs, ranging from women, hepatitis co-morbidities, transgender individuals, nutrition, homelessness and housing, and delivering culturally competent care.
- Clinical training has prepared generations of clinicians to deliver quality HIV care.
- A quality management and performance measurement system provide the framework for agencies to achieve high standards.
- A back office infrastructure makes clinics work better through data systems, and medication delivery under the AIDS Drug Assistance Program(ADAP).
- A planning processExit Disclaimer with broad community participation by affected communities is using new data tools to make wise decisions about the use of funds.
- Research into care demonstration models has taken place over the decades to come up with new insights in care delivery and system change targeting health disparities affecting racial and ethnic groups the hardest. A few include: care engagement for young Black Men Who Have Sex with Men (MSM), women of color, and Latinos, and buprenorphine use among HIV-infected substance abusers.
- And, finally, technical assistance and trainingExit Disclaimer has developed hundreds of best practices to break down disparities, including peer training to involve consumers in care teams, data systems development that supports a robust client-level data system, planning body preparedness, enrollment in new care coverage under the Affordable Care Act, and fiscal training to prepare Ryan White HIV/AIDS Program recipients to contract and bill in an evolving health care landscape.
Redoubling Our Focus on Minority PopulationsLooking forward to our 2016 National Conference, we will explore the challenges that lie ahead as we work to end AIDS in the U.S. During the conference we will take a hard look at what we can do in the context of the Ryan White HIV/AIDS Program, and by partnering with others in and out of the federal government, to overcome the structural barriers that are the root of so many health inequities – things like inadequate housing, transportation, and food insecurity. We’ll look at leadership’s new and concentrated approach to ending the epidemic in their areas, and we’ll explore new ways of using existing data to better target interventions. Recipients and stakeholders will share innovations and best practices across the care continuum that make a real difference in their communities
Along these same lines, HRSA recently released a series of funding announcements to get new minority-focused health initiatives in place, under the Secretary’s Minority AIDS Initiative Fund (SMAIF). Although they tackle a diverse range of topics, all have a singular focus on addressing disparities. One will explore the use of community health workers to improve linkage and retention in HIV care. Long-standing disparities in HIV care among Southern metropolitan areas will be addressed in another initiative. Another will support training in care for HIV/Hepatitis C co-infected people of color. Yet another will provide leadership training for people of color living with HIV. An added focus will be involving transgender women of color living with HIV in leadership opportunities to help break down severe disparities seen in terms of HIV and associated barriers to care, from stigma to interpersonal violence.
Each of these upcoming initiatives continues our original mission: to fill gaps in care and to do so by innovating and adjusting the Ryan White HIV/AIDS Program infrastructure to do even more to reduce disparities and, ultimately, to achieve an AIDS-free generation.