Celebrating the 25th Ryan White Anniversary

By Mike Weir September 9, 2015

Since the passage of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990, the Ryan White HIV/AIDS Program has provided care and treatment to over a million people living with HIV.

When President George H.W. Bush signed the bill into law on August 18, 1990, more than 150,000 cases of AIDS had been diagnosed in the U.S., and, of those people, over 100,000 had died. In its first year of enactment, the Health Resources and Services Administration (HRSA), the agency responsible for administering the program, increased spending on HIV by 13-fold, from $16.5 million for AIDS Service Demonstration Grants in FY1990, to $220.6 million for the Ryan White CARE Act in FY1991.

Andrew Gans, Manager for the HIV/STD/Hepatitis Section in New Mexico and NASTAD Chair, recalls, “When Ryan White first passed, it was the largest resource in many places – the only large source of government funds in some of those.  For us, it meant having stable funding to create infrastructure and systems – most notably our network of case management providers that linked everything else together.  It also forced us to conduct planning and needs assessment, which resulted in different organizations coming to the table for whatever reason and learning how to partner.”

As the program moved forward, and was reauthorized in 1996, 2000, 2006 and 2009, it began to change to meet the needs of the population it was serving. “The needs of people living with HIV have changed drastically… we’re not creating infrastructure, but rather revising and enhancing based on new science, priorities and needs.  And we’re not focused on hospice, home care and persons in and out of hospitals, so we can look more holistically of the needs of clients to live in a healthy way,” Gans added.

From its inception, the AIDS Drug Assistance Program (ADAP) has also progressed with the changing HIV landscape. When it was initially the AIDS Drug Reimbursement Program, which launched in 1987, only AZT was covered, but once the program was integrated into the Ryan White ADAP Program, the list of covered drugs increased. With the discovery of highly active antiretroviral therapy (HAART) in 1996, ADAPs expanded their formularies to cover these combination therapies due to their breakthrough abilities to delay or prevent the onset of symptoms or progression to AIDS.

DeAnn Gruber, Administrative Director of the STD/ HIV Program in Louisiana and NASTAD Chair-elect, added, “Another change that occurred is the establishment of six core service categories and the requirement that at least 75 percent of Ryan White funds are expended for those services, placing additional emphasis on medical care and directly related services.  In Louisiana, we have always been able to meet this requirement since a significant portion of funding is allocated to support health insurance and medications assistance, but again, it brings to light the evolution of the program to focus on life-saving services vs. those that were essential 20-25 years ago before the introduction of anti-retroviral medications.”

As the country continues to implement the Affordable Care Act, the Ryan White Program will have increased opportunities to evolve to meet the needs of people living with HIV and impact the HIV epidemic. Dawn Fukuda, Director of the Office of HIV/AIDS in Massachusetts, states, "Ryan White could evolve so that the program continues to assure basic access to care and treatment for all HIV-positive individuals, and also focuses services more intensively on the highest acuity individuals, maximizing engagement and retention in care and viral suppression and improving health outcomes at all stages along the HIV care continuum."

To celebrate the Ryan White Program’s 25th anniversary, today the White House is holding an event highlighting the successes of the program and path forward. With the recent release of the National HIV/AIDS Strategy: Updated to 2020, the Administration emphasized the significant role the Ryan White Program plays in providing services to those living with HIV who would otherwise be unable to obtain the lifesaving treatment and support they need. Additionally, in honor of the anniversary, President Obama released a letter calling for the community to “rededicate ourselves to supporting those touched by HIV, their families, and the medical and social service professionals working to defeat it.”

As we celebrate the achievements of the Ryan White Program and work towards a future reauthorization, NASTAD will continue to work with our members and the greater HIV community to develop recommendations for Congress for the program’s eventual reauthorization.