Is it Time for a Reset to the Ryan White CARE Act?

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

It has been almost 27 years since the mother of a young boy dying of AIDS received a phone call from the late Senator Edward Kennedy (D-MA), asking if it would be okay to attach the boy's name on federal legislation.1 That young boy's name was Ryan White, and it has become synonymous with the Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act). Since 1990, it has saved countless lives of people living with HIV/AIDS in the United States. The law is due to be re-authorized by Congress, and some are asking if the time is right for a "re-set" so that the supports and services authorized under the law better reflect the state of the epidemic.

HIV surveillance data reveals some interesting trends about the epidemiology of the disease over time. Diagnosis of HIV infection demonstrates that some things have remained constant, such as men who sex with men (MSM) and intravenous drug use (IDU) represent two of the high-risk transmissions groups. But today, HIV infection disproportionately impacts communities of color, as well as people living in rural areas of the country. Heterosexual woman and adolescents are also greatly at risk for HIV infection.

The following charts published by the Centers for Disease Control & Prevention (CDC) help to explain the trends in HIV diagnoses in the United States between 2010 - 2014:2

Photo Source: CDC

Photo Source: CDC

Photo Source: CDC

According to the CDC, "The South now experiences the greatest burden of HIV infection, illness, and deaths of any U.S. region, and lags far behind in providing quality HIV prevention and care to its citizens." It begs the question, shouldn't the federal government adopt a "money follows the person" paradigm to reflect the changing epidemiology?

Some of the important questions surrounding Ryan White reauthorization include the following:

• should funding stream formulas count cumulative AIDS cases or only living HIV-positive people?
• should wrap-around services be expanded for clients who have Medicare Part D, Medicaid or Veterans Affairs healthcare?
• should coverage include inpatient hospital care?
• should coverage include Hepatitis C (HCV) drug therapies?
• should commercial health insurance premium assistance programs be liberalized?

"At a time when we have the most effective and simple HIV treatments and a very volatile healthcare insurance landscape, WE NEED the Ryan White safety net program for continuity - less we forget without care and treatment HIV is a deadly and transmissible disease," summarized David Poole, Director of Legislative Affairs at AIDS Healthcare Foundation."

Next week this issue will be discussed at the ADAP Advocacy Association's AIDS Drug Assistance Program Regional Summit in Raleigh, North Carolina. "Ryan White & Service Delivery Systems in the Age of Budget Austerity" is one of the topics on the agenda with leading policy stakeholders concerned about the future of the program, and potential impact on patients living with HIV/AIDS and other underserved populations.

For complete information about the Ryan White CARES Act please visit http://hab.hrsa.gov/abouthab/legislation.html.


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[1] Groppe, Maureen (2014, July 30); Future of Ryan White program not clear; JConline. Retrieved from http://www.jconline.com/story/news/2014/07/30/future-ryan-white-program-clear/13376961/.
[2] National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention (2017, March 24); HIV Surveillance—Epidemiology of HIV Infection (through 2015); Centers for Disease Control & Prevention, U.S. Department of Health & Human Services. Retrieved from https://www.cdc.gov/hiv/pdf/library/slidesets/cdc-hiv-surveillance-genepi.pdf.
[3] Centers for Disease Control & Prevention (2016); HIV in the Southern United States; TheBody.com. Retrieved from: http://www.thebody.com/content/76879/hiv-in-the-southern-united-states.html.