Legacy of Ryan White Lives On Via AIDS Assistance Legislation

Ten years ago this month Ryan White, an 18-year-old from Indiana, died of AIDS contracted via transfusions for his hemophilia. The life-prolonging drugs we have today did not come soon enough for Ryan, who fought not only HIV but the discrimination, fear and ignorance that still accompany the disease.

That same year, a piece of federal legislation named the Ryan White Comprehensive AIDS Resources Emergency Act (also known as the CARE Act) was passed. Its purpose was to provide federal assistance to state and local jurisdictions most heavily affected by HIV. The monies were funds of last resort--not to supplant existing programs but to help communities join together in a unique planning process.

In 1993 Orange County became eligible for CARE Act funds and created the HIV Planning Advisory Council to identify needs and coordinate delivery of vital medical care and essential support systems to thousands of residents throughout the county. Today’s organized system of care has treated nearly 8,000 of the county’s mostly low-income, uninsured and underinsured residents. The system provides such services as medical exams, drug therapy, home health and hospice care, housing, legal assistance and counseling through cooperative efforts by nonprofit organizations such as the AIDS Services Foundation, the Gay and Lesbian Center, Laguna Beach Community Clinic and the county Health Care Agency. This is truly a model for other diseases here in Orange County.

But now that system is in jeopardy. The Ryan White CARE Act expires Sept. 30. Congress must act to keep it alive.

One advantage of the CARE Act is that it allows local control and is based on the recognition that medications alone are not enough to successfully fight AIDS. We have worked effectively to improve the quality of life dramatically for patients and their families living with HIV, reduce the use of costly inpatient care and increase access to care for underserved populations, including people of color. This coordinated and comprehensive approach makes the CARE Act a cost-effective and efficient investment that must be continued.

Here in Orange County we are not relying only on state and federal funding. Through strong private-sector efforts, we raise thousands of dollars. A good example is the AIDS Services Foundation, which currently serves more than 1,100 clients and last year raised more than $665,000 with AIDS Walk Orange County. These funds are then shared with six other HIV-related agencies, another example of how well the HIV community works together.

With the advent of protease inhibitors and other drugs, the care agencies are seeing fewer deaths--but an increasing client load. Here, as in other areas of the state and nation, the face of AIDS has changed. Latinos now make up more than 38% of the cases, African Americans are disproportionately affected and more women are infected.

The U.S. Public Health Service has estimated that the lifetime cost of providing medical care to one person with HIV is $119,000. If this estimate is correct, then almost $800 million would be needed to care for the estimated 6,700 individuals living with HIV in Orange County.

The current medical needs of many Orange County residents are not being met, and health care appears not to be a high priority for the Board of Supervisors. If Orange County were to lose this federal funding, it would be a disaster for the HIV-infected and -affected of Orange County.

That’s why it is vital that the Ryan White CARE Act not expire Sept. 30 and that its funding continue to increase according to need.

A bipartisan effort has prevailed in the past, with local legislators playing a leadership role. Rep. Christopher Cox (R-Newport Beach), a member of the Commerce Committee, where the reauthorization originates, is a strong supporter of the CARE Act. Rep. Loretta Sanchez (D-Santa Ana) is also in favor of the reauthorization. With the backing of the rest of the Orange County delegation, we can continue to provide these needed services and not have to rely solely on local funding.

We have come a long way since the beginning of the epidemic in terms of what we know about HIV and how to treat it. In Orange County we have demonstrated how well the CARE Act works. With public-private partnerships and a case management model that not only encourages self-reliance but advocates prevention, we are able to see individuals who had little hope now living productive lives. Our accomplishments are a good start on a difficult problem. We still have a long way to go. There is no cure or vaccine. Today, however, I salute a hero, Ryan White, 10 years after his death. His legacy lives on.