Three More Years of Ryan White

When paramedics rushed Reginald to the emergency room at San Francisco General Hospital in 1998, his right leg was going into spasms. That day, Reginald learned he had AIDS -- and that toxoplasmosis, an opportunistic illness associated with immunodeficiency, was attacking the left side of his brain.

"When I was first diagnosed, I only had 27 CD4 cells," Reginald said. "I've never seen a nurse cry until she dealt with me."

Today, Reginald is successfully managing his health, thanks in part to medical care from Positive Health Practice at San Francisco General Hospital's Ward 86, financial support from the AIDS Emergency Fund, and rental assistance through the San Francisco AIDS Foundation's housing subsidy program.

Financial benefits counselor Ellen Novogrodsky knows that clients living with HIV will have three more years of support for medical care, drugs and other services under the new bill.

All three programs have received federal funding through the Ryan White Comprehensive AIDS Resources Emergecy (CARE) Act, the country's largest disease-specific discretionary program and a frequent target of Congressional funding cuts. But Reginald and other San Franciscans living with HIV can rest easier now that Congress has passed a compromise version of the CARE Act, extending this crucial legislation for three more years and eliminating proposals that would have slashed funding in the city and across California.

The reauthorization, which President Bush signed on December 19, eliminates provisions originally opposed by SFAF, including a potential $10 million annual cut for San Francisco and a $50 million cut for California. The bill protects funding for cities and states that previously operated code-based, rather than name-based, systems of reporting new HIV cases to the federal government. (In April 2006, California changed from its code-based system, joining most other states in reporting and tracking new HIV infections by name.)

"At the end of the day, everyone came away with something but remained a bit dissatisfied -- the sign of a tough but fair negotiation," said Ernest Hopkins, SFAF's Federal Affairs Director. "The bill recognizes that infection rates are climbing in rural parts of the country but also takes into account entrenched epidemics in urban America that still demand care and treatment resources. The original bill was like asking people with HIV who rely on CARE Act services to jump off a cliff with no parachute."

Over the last two years, SFAF worked with advocates from other cities and states that would have suffered under the changed bill. According to Hopkins, this version is an improvement on its predecessor, a bill he called "a flawed piece of legislation that enacted dramatic policy and funding changes in the final two years of a five-year authorization -- with no accurate understanding of their effect on already vulnerable community and state health care infrastructures." The bill would have threatened access to drugs and medical care for thousands of CARE Act clients and would have led to significant undercounting of HIV cases in the city and state.

First enacted by Congress in 1990, the CARE Act was reauthorized in 1996 and 2000, and expired in September 2005. It provides more than $2.1 billion annually for primary medical care, pharmaceutical treatments, and support services for more than 500,000 Americans living with HIV/AIDS.

The compromise legislation still contains a few provisions that SFAF did not support. It allocates 75% of funding to a restricted list of core medical services, with only 25% of funding earmarked for vital supportive services such as housing, food, and case management. "We have a very good medical system in San Francisco, and we haven't needed to spend 75% of our CARE money on medical services," Hopkins said. "We've been able to spend our money on things we need really badly, like housing." But with non-medical services capped at 25%, "that is going to be a challenge which could have a big effect on people locally, including many who depend on CARE money to support their transitional housing needs."

For clients of the San Francisco AIDS Foundation, this limitation may turn into a serious problem. "A higher percentage of that money should go toward housing," Reginald said. "The small amount of money I receive each month from Social Security is not enough for a place. Without that funding for housing, it makes it hard for a person like myself who doesn't want to live on the streets."

SFAF and its peers are working to ensure that Congress will allocate the $90 million in new funds that are necessary to enact the compromise. If successful, Hopkins said, states with entrenched epidemics, such as California, will maintain funding levels for services. "The parts of the country that have been woefully underfunded will receive significant new money, so these terrible ADAP waiting lists -- where people are actually dying waiting to get access to their AIDS drugs -- will go away."

Listen to SFAF Federal Policy Director Ernest Hopkins discuss the compromise bill in the SFAF podcast, at sfaf.org/podcast/hopkins.