Oct 14, 2005  |  By: DYANA BAGBY  | COMMENTS     

AIDS activists are calling on Congress to renew the federal Ryan White CARE Act that provides funding for services and programs for those with HIV and AIDS. The act, originally passed by Congress in 1990, expired Sept. 30.

Funding for the act is continuing to be appropriated and a draft bill may come as soon as next month, according to Carl Schmid, director of federal affairs for the AIDS Institute, a national public policy organization.

Congressional leaders currently working on the draft bill are Sens. Michael Enzi (R-Wyo.) and Edward Kennedy (D-Mass.) and Reps. Joe Barton (R-Texas) and John Dingle (D-Mich.), Schmid said.

“We heard today there may be something by the end of November. We are very pleased this is a bipartisan effort and to see the parties working together,” Schmid said Wednesday.

Renewal of the Ryan White CARE Act, named for the 13-year-old Indiana boy who put a face on the disease, has always been a bipartisan effort, Schmid noted.

“Everyone’s committed to reauthorizing it,” Schmid said. “The administration definitely wants reauthorization and wants to see changes. The Hill and the community want to see it reauthorized. Unfortunately, there have been a lot of unforeseen events — such as the Medicaid bill and Hurricane Katrina — that has slowed the process.”

President George W. Bush called for the act’s renewal in his State of the Union speech earlier this year and his administration has put out proposals for the act, including having funds distributed to smaller cities that haven’t received as much funding in the past, Schmid noted.

“This act must be improved and modernized so we can bring compassionate care and treatment to those Americans living with HIV/AIDS,” Health & Human Resources Secretary Michael Leavitt said in July.

Jeanne White-Ginder, mother of Ryan White and a board member of the AIDS Institute, recently urged Congress to pass the act.

“I only wish when Ryan was alive these drugs were available,” she said in a Sept. 29 statement. “Today, I see people being kept alive and able to live healthy and productive, longer lives — but only when they are able to receive their medications and access medical care.”

Jeff Graham, policy director at AIDS Survival Project, said AIDS service organizations are in a “holding pattern” right now.

“We certainly hope Congress acts as swiftly as possible,” he said. “We also hope Congress takes the time to reflect on the challenges faced in the HIV community.”

Funding changes?

Proposed changes to the act, which has been renewed every year since it was introduced 15 years ago, include more funding to smaller cities as well as taking into account the number of HIV and AIDS cases together in states, rather than just the number of AIDS cases, when allocating money, Schmid said.

Advances in treatment have helped people with HIV lead longer, more productive lives. These advances, combined with a steady number of new infections — about 42,000 a year — have meant that more people than ever before, up to 1.2 million, are now living with the virus, according to AIDS Action Council, an organization of some 100 groups fighting HIV and AIDS.

The numbers show the face of the disease is changing and the law should change to reflect those changes, Schmid said.

Title I of the Ryan White CARE Act provides funding to Eligible Metropolitan Areas that are most severely impacted by the disease. There are 51 EMAs in the U.S.

Total Ryan White Title I funding for 2005 reached $587 million nationwide, according to the U.S. Department of Health & Human Services.

Schmid cited North Carolina — which has several large cities, including Raleigh and Charlotte, that don’t qualify for Title I funding — as an example of needed changes in the act.