The 25th Anniversary of the Ryan White CARE Act

Actor Paul Michael Glaser and his wife Elizabeth testifying in Washington before the House Budget Committee's Task Force on Pediatric AIDS, 1990.

hab.hrsa.gov

This week marks the 25th anniversary of President George H.W. Bush signing the Ryan White CARE Act into law. Since its inception the CARE Act has been instrumental in ensuring that Americans affected by HIV have access to the critical care and treatment services they need not only to survive but to thrive.

It is also an important part of EGPAF’s history, as Elizabeth Glaser was influential in ensuring that HIV programs in the United States addressed the unique needs of pregnant women and children. This started when she first advocated for demonstration projects in the late 1980s to address the dramatic uptick in transmissions between mother and child. Not only were the new cases worrying, but the stigma and discrimination surrounding HIV/AIDS were making accessing services more difficult. 

At the time, the hope was to just enroll women and children in clinical trials to better understand mother to child transmission of HIV, how to prevent it, and how to care for and treat pregnant women and children.

When the Ryan White CARE Act was finalized, the demonstration projects were rolled into the bill—and Elizabeth being the ever passionate advocate helped build bi-partisan support for the bill, assisting in its passage. 

As Senator Orrin Hatch (R-UT) mentioned in remarks on the legislation: “Elizabeth has not just languished and complained and worried about the disease that has afflicted her and her children. She has gone out and raised millions of dollars for pediatric AIDS research and treatment all over this country. The least we can do as a Government is help the kids like Ryan White; babies, unlike Ryan White, who will die before they even reach Ryan White's age; help them with this difficult burden and problem of AIDS.”

And Congressman Mel Levine (D-CA) on Elizabeth: “A number of us here in the Congress, and particularly a number of us in California, have learned quite a bit about the tragedy and travail that has occurred in the pediatric AIDS area through the courageous leadership of the Pediatric AIDS Foundation, which happens to be located in my district, and its two key leaders, Elizabeth Glaser and [EGPAF co-founder] Ms. De Laurentis. Ms. Glaser and Ms. De Laurentis have done a fine job, as has their staff and fine volunteer organization, in educating Members of Congress around the country with regard to the urgency of focusing much more attention and much more resources in the pediatric AIDS area. This legislation … will do a great deal to advance that cause.”

After it was discovered in the early 1990s that antiretroviral therapy could greatly reduce mother-to-child HIV transmission rates, the research-focused demonstration grants began to evolve into a service delivery program focused on the needs of women, infants, youth, children and families. Commonly known as Ryan White “Part D”, the grants provided under this arm of the program were instrumental to identifying and ensuring HIV positive pregnant women were accessing services—leading to a significant decline in the number of children born HIV positive.

Today Ryan White Part D remains dedicated to helping women, infants, youth, children, and families living with and affected by HIV and AIDS in the United States. Ryan White Part D continues to be imperative in addressing the unique needs of HIV-positive pregnant women and their children, including case management, transportation, childcare and linkages to and provision of care and treatment services. In fact, Part D of the Ryan White program is largely credited for transmission rates in the United States between mother and child remaining very low to this day.

Elizabeth’s legacy remains strong as we continue in her spirit to advocate for robust programming both in the United States and around the world to help moms reduce HIV transmission to their children, and ensure that mothers and children everywhere have the resources they need to live long and healthy lives.