After a year of legislative wrangling, Congress is poised to renew the Ryan White CARE Act.
The act, which provides more than $2 billion in federal funding for local services and programs for people living with HIV and AIDS, expired 12 months ago.
Early attempts to renew the act were stifled by political bickering and bureaucratic procedures. But a new plan, expected to be unveiled next week, could finally force action on the issue.
AIDS activists who’ve closely followed the renewal process welcomed the new momentum, but remained guarded.
“My hope is that we can get a bill that we can live with,” said Jeff Graham of the AIDS Survival Project in Atlanta. “But my concern is that won’t happen.”
The act’s funding formulas are expected to be rewritten so money is distributed based on a state’s total number of individuals with HIV cases, not just those with full-blown AIDS.
Activists fear that revision, coupled with the act’s stagnant funding, could take money away from states and cities with patients in the most dire need of care.
“A certain amount of redistribution has to be done,” said Edward Hopkins, director of federal affairs for the San Francisco AIDS Foundation. “But it can’t be done in a way that dismantles the systems of care that already exist.”
The revised formula is expected to benefit rural regions at the expense of metropolitan areas, critics said, but it’s unclear to what extent. A report from the U.S. Government Accountability Office is forthcoming.
In the meantime, Hopkins said activists and AIDS service providers are waiting to see if the upcoming House plan “is going to be something that everyone can live with.”
“We’re all crossing our fingers,” he said, “and hoping that the draft that we will see very shortly is going to be something that’s very responsive to all the concerns that we’ve raised.”
The new plan is widely expected to be a reworked version of a Senate plan offered earlier this year.
Presented by conservative Sen. Tom Coburn (R-Okla.), that plan revised the Ryan White funding formula with a new requirement that 75 percent of all act money be spent on primary medical care.
The Senate Committee on Health, Education, Labor & Pensions voted 19-1 in May to approve the plan. Sen. Hillary Clinton (D-N.Y.), the lone dissenter, said then that she voted against the plan because her state could lose $20 million under the proposed funding revisions.
Several mainstream and alternative media outlets criticized Clinton last week, claiming she was stalling renewal of the act. The reports cited her committee dissention, but failed to note the vote occurred nearly four months ago.
Activists said this week that Clinton is not stalling Ryan White renewal efforts. Clinton’s office did not return calls seeking comment.
D.C. official fears loss of funds
Dr. Patricia Hawkins, associate executive director for policy and external affairs at the Whitman-Walker Clinic in Washington, D.C., said the reworked plan will include a “hold harmless provision” to limit such losses.
She said the clause precludes jurisdictions from losing more than 10 percent of their previous allocation.
“That might protect us to some degree,” Hawkins said. “But the next year, you lose more money, and the next year you lose more money, and so on.”
Hawkins and other activists said such spiraling losses violate the spirit of the Ryan White program, which was enacted in 1990 to help people living with HIV and AIDS. The program is named after a severe hemophiliac who contracted HIV from a blood product.
States most affected by the epidemic have received the greatest funds. Among the states to receive the most money are New York at $349 million, California at $256 million, and Florida at $205 million.
The District of Columbia, which has the nation’s highest HIV infection rate, received $54 million in 2004.
Rebecca Haag, executive director of the AIDS Action Council, said the allocations may appear impressive, but are insufficient.
“The reality,” she said, “is that we need additional funding to meet that unmet need.”
Funding increase unlikely
Activists agree, however, that it’s unlikely Congress will significantly increase Ryan White funding.
Congress has not offered a significant increase, and the administration is not seeking one. In his state of the union address in February 2005, President George Bush only asked Congress to reauthorize the act.
“Because HIV/AIDS brings suffering and fear into so many lives,” he said, “I ask you to reauthorize the Ryan White Act to encourage prevention, and provide care and treatment to the victims of that disease.”
Hawkins criticized the flat-funding approach as “insane public policy.” She said as more people seek treatment, there’s less money to care for each person.
“You want to keep people as healthy as you can as long as you can,” she said, “and that takes resources.”
Graham said activists — and HIV patients — would welcome any funding increases. But he’s lobbied Congress to take a more holistic approach as it revises the act.
“We need to look at the act comprehensively,” Graham said. “The guiding principal of it really needs to be how do we increase infrastructure where it is needed, without devastating the infrastructure that does exist.”
Many activists fear the act’s revised funding formula could devastate local care programs. Hawkins said services in Washington are already struggling to keep up with demand.
“The cases just keep growing,” she said, “and with no new dollars, it’s been extremely difficult to keep up.”
Hawkins said a cut in the funding that Washington, or any other major metropolitan area receives could trigger “a major crisis for people living with HIV and AIDS.”
For that reason, she said, activists will closely examine the proposed House bill.
“If they’ve come up with a bill that somehow decreases our ability to help people,” Hawkins said, “I think the AIDS activist community will have to fight that.”
But activists said they’re encouraged by the generally bipartisan process that is leading to the act’s renewal.
Haag said legislators and activists alike have worked toward the greater good.
“We’ve tried to put aside our political and regional differences,” she said, “and have tried to do our best in an environment of limited resources to improve the lives of those living with HIV and AIDS.”
Hopkins said legislators have also worked recently to expedite the overdue renewal by making the project a bicameral effort.
This collaborative effort between House and Senate members means the bill, once unveiled, may be quickly approved by both chambers. He said some legislators are aiming to renew the act by the end of this month.
“It’s ambitious,” Hopkins said, “but nobody wants to start over with a new Congress next year.”
Activists said the goal is achievable, provided the House unveils a bill that truly supports the nation’s AIDS care programs.
“People in this country are tired of the bickering of politicians,” Haag said, “and are looking to Congress to act and do what’s right for the public good.”