Ryan White HIV/AIDS Program a huge success—let’s build on it

Political gridlock in Washington, and the penchant of many conservatives to portray government programs as destined to fail, can breed cynicism about what government can accomplish. But one program created 25 years ago this week—the Ryan White HIV/AIDS Program—has literally saved hundreds of thousands of lives, and serves as a model for transforming our broader health care system.  

The Ryan White CARE (Comprehensive AIDS Resources Emergency) Act was passed in 1990 to fund community-based HIV care and support services for low-income, uninsured, and underinsured people. In 1990 people with AIDS struggled to access basic medical care. It was nearly impossible to get insurance. In 2015, thanks to the Affordable Care Act (ACA) prohibition on exclusions based on preexisting condition, thousands of people with HIV can now access marketplace insurance. In the 28 states expanding Medicaid, people with HIV but not AIDS can now access that insurance program. The ACA removes caps on coverage. These changes benefit everyone, and especially people with chronic diseases. 

{mosads}Ryan White has created an effective, comprehensive HIV medical care model. In 1990, most people infected with HIV quickly developed AIDS, got sick, and died. It was a time of desperation, ignorance, fear, and bigotry. The advent of effective antiretroviral therapies in 1996 transformed HIV from a likely death sentence to a manageable chronic condition. Today 46 percent of Americans receiving antiretroviral treatment for HIV use the AIDS Drug Assistance Program, a key component of Ryan White. People are now living into their 60s, 70s and beyond with HIV. 

Patient centered medical homes—where a team provides coordinated, comprehensive care to a patient over the long-term—are a buzz word in health care today. Ryan White pioneered the concept 20 years ago. One element key is the provision of comprehensive enabling services not covered by insurance. Part C of the Ryan White Program directly funds 350 organizations to support a continuum of HIV health care and support services, including case management, risk reduction counseling, and treatment adherence counseling. Ryan White also funds housing support, nutrition, legal services, and transportation—especially important in the rural South. People living with HIV often have life challenges and complex comorbidities—such as substance use and mental illness—that complicate their ability to maintain treatment adherence and continuous care. Ryan White funds services that help many highly vulnerable individuals maintain stability in their lives, and are essential to the success of core medical treatments.  

The half million Americans receiving care through the Ryan White Program are more likely than people with HIV not in Ryan White care to receive regular medical care, and they are more than twice as likely to be virally suppressed. Viral suppression is a key to reducing new HIV infections. Success in Massachusetts, where new HIV diagnoses fell 45 percent from 2001-2010 as insurance and Medicaid coverage expanded, augers well for the country as whole. 

Ryan White is still needed because of the unequal expansion of Medicaid. In the 22 states that have declined to expand Medicaid eligibility, thousands of poor people with HIV are categorically ineligible for Medicaid, but do not earn enough to qualify for subsidies to help them purchase marketplace insurance. Many of the states that have not expanded Medicaid are home to striking health disparities. Fifty-one percent of new HIV diagnoses occur in the South. Fifty-five percent of black Americans living with HIV live there. Yet in many states one must be incredibly poor to qualify for Medicaid. In Alabama one must earn 16 percent of the federal poverty level or less to qualify—that’s $3,221 for a family of three. People with HIV will continue to need the critical services funded by Ryan White, especially in the 22 states that have not expanded Medicaid eligibility.  

While we should celebrate the successes of the Ryan White HIV/AIDS Program, we should also take steps to strengthen it. First, we must increase funding, which has remained flat over the past decade even as the caseload has nearly doubled. Second, we must train the next generation of HIV providers. Many are nearing retirement age. Targeted loan forgiveness, increased support for clinical training opportunities in HIV medicine, and increased Medicaid reimbursement rates for HIV care could all help to increase the number of newly trained primary care providers specializing in HIV care. Finally, with half of Americans with HIV now age 50 or older, we must train elder service providers to provide culturally competent and nondiscriminatory care to older adults living with HIV. 

Cahill is director of Health Policy Research at the Fenway Institute. Mayer is professor at Harvard Medical School, Infectious Disease Attending and director of HIV Prevention Research at Beth Israel Deaconess Medical Center, and co-chair of the Fenway Institute.

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