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Stretching the Safety Net

AIDS Advocates Worry State Could Lose Millions if Congress Approves Changes to Ryan White CARE Act

Uli Loskot
EPIDEMIOLOGY: AIDs advocate Greg Manigo fears that proposed cuts to federal aids funding will cripple the kind of programs that helped him thrive and become an activist.

By Christina Royster-Hemby | Posted 11/30/2005

Greg Manigo, 33, smiles slightly as he takes his place among the other graduates on an auditorium stage. He is there to receive a certificate that will mark the culmination of six months of hard work. When his name is called, cheers erupt from the audience. The certificate he receives today marks the completion of his training to become an HIV/AIDS advocate in Baltimore, where he hopes to open a transitional home for young gay men infected with HIV or AIDS and recovering from drug abuse.

But as Manigo returns to his place alongside the rest of his graduating class, his smile fades. While Project L.E.A.P. (Leadership, Empowerment, Advocacy, and Participation), a program sponsored by Associated Black Charities and funded by federal Ryan White Comprehensive AIDS Resources Emergency Act money, has offered him and 12 other potential advocates the skills they need to work in the HIV/AIDS services field, the program may not last much longer. The program and others like it may be affected by the actions of Congress, which is working on reauthorization of the Ryan White CARE Act, a federal program that bankrolls medical and social-services programs for un- and underinsured individuals with HIV or AIDS. The CARE Act is up for reauthorization this year, and President George W. Bush and the U.S. Department of Health and Human Services have issued a list of recommendations for changes to the program they’d like to see implemented with its renewal. The recommendations are now before Congress, and AIDS advocates worry that, if approved, they could reduce the amount of money available to some states. The changes would make it a priority to get funds to states with emerging HIV/AIDS problems and few resources to deal with the disease; that could have an impact, advocates say, on the money available for states that have traditionally had larger populations infected with HIV/AIDS and established AIDS services to deal with them.

“The Secretary of Health and Human Services would develop a ‘severity of need’ for core-index services,” according to a release from the Department of Health and Human Services. “It would take into account not only HIV incidence but levels of poverty, availability of other resources including local, state, and federal programs and support, and private resources.”

Advocates in Maryland, which has the third-highest incidence of AIDS cases among the 50 states, are afraid this state could lose up to a third of the money it receives from the Ryan White CARE Act if the changes are put into place. That’s money they say they cannot afford to lose.

The Ryan White CARE Act is named for Ryan White, a teenager who became infected with AIDS through a blood transfusion. White, who was banned from his school due to his infection, drew national attention to the disease through his high-profile battle against AIDS-related discrimination. He died in 1990, and the CARE Act was passed by Congress later that year. The act is up for renewal every five years, and when that happens the language and scope of the bill may be changed. It was last reauthorized in 2000, and at that time funding for the program was increased by several million dollars, according to
the Health Resources and Services Administration, a division of the Department of Health and Human Services. This year, however, the president is hoping to “modernize” the act. According to a July press release, the changes he and Health and Human Services are suggesting will “strengthen the program, support compassionate care and treatment, and encourage prevention efforts.”

“The principles are put out there to reflect what the administration would like to see,” says David Bowman, a representative for the Health Resources and Services Administration. “There are many competing viewpoints. There’s been some parties who have analyzed it and said it’s going to help this party over this party, and that may be the case. [But] we feel that these principles will take the CARE Act in the direction it needs to go to address the epidemic.”

But that could mean states with strong sources of HIV/AIDS funding besides Ryan White, like Maryland, could lose some of the CARE Act money they have traditionally received, because they do not have the “severity of need” poorer states may have. For example, other sources contribute roughly $75.5 million to HIV and AIDS programs annually in Maryland, according to consulting firm Intergroup Services, which provides assistance to various city health organizations.

“That money covers people who are insured,” says Intergroup Services CEO Cyd Lacanienta. “But the money that would be cut from Ryan White goes to people who are not insured, have no access to care, and no way of paying.”

Nationwide, the CARE Act pumps $2 billion into the HIV/AIDS community each year. Maryland receives $62 million in funding from the act, and Lacanienta says her organization estimates that the state stands to lose $18 million of that amount should Congress approve the recommended changes.

That could lead to the reduction of services from programs that use the CARE Act money to operate, such as Sisters Together and Reaching, an organization serving women with HIV/AIDS, and the Baltimore Pediatric HIV Program, which provides services for families affected by HIV/AIDS.

“We see at least 150 women, children and families per month,” says Debbie Rock, executive director of the Baltimore Pediatric HIV Program. “[We] provide life-saving primary medical and psychosocial supportive services, such as child-care services, that allow [people] to go to their medical appointments. Without Ryan White funds, our organization, and many like ours, would cease to exist.”

Naomi Tomoyasu, acting director of the Maryland AIDS Administration, says the state needs “not only to maintain our funding but to get more funding. If funding is reduced, critically needed services will be cut, [and] those who need care most will suffer.”

Congress is likely to reauthorize the Ryan White CARE Act some time in 2006, and Tomoyasu says it is still unclear how things will pan out for the state. She acknowledges that Maryland could lose up to $18 million if the president’s recommendations are approved, but she also notes that it’s not possible to predict how Congress will act.

“It could be more, it could be less, or Maryland could gain money,” Tomoyasu says. “We’re not sure because it has not been reauthorized yet.”

Lacanienta acknowledges that “the president’s recommendations are guiding recommendations” and that Congress could choose to reject or accept them. However, she says, Marylanders can’t sit idly by to see what happens. She is involved with a national group called the Campaign to End AIDS, which has been organizing marches around the country and in Washington to tell Congress that it should fund AIDS services in all states, despite the amount of money available from other sources.

“People are acting as if the cure for HIV and AIDS has been found,” says Herman Carter, spokesman for the Maryland delegation of the Campaign to End AIDS. “The attitude is ‘Take two aspirins and call the doctor and everything will be alright in the morning.’ Not true. People are still dying from this disease every day. . . . That’s why we can’t wait to see what happens with the reauthorization.”

“People are in a wait-and-see attitude,” Lacanienta agrees. “But if you have that attitude, you wind up in the middle of a Hurricane Katrina, where you find out at the worst time that the safety nets are no longer there. Ryan White is the safety net for people living with HIV and AIDS.”

It’s a safety net Greg Manigo was thankful to have back in 2002 when he was living in transitional housing and only had access to health care through services funded by federal Ryan White funds.

“Without the Ryan White CARE Act I would not have been able to afford healthy, safe medical care, or afford the lifestyle that I have come to know now,” says Manigo, who regularly goes to local nightclubs to talk to young men about protecting themselves against HIV/AIDS. “I just hope that I will have the opportunity to use the training I acquired to help other youth who find themselves in that position someday.”

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