WASHINGTON – AIDS started as a big-city epidemic infecting mostly gay white men, and now it's prevalent in the South and among minorities. Yet the federal law that helps the neediest patients has not kept up with that evolution.
By some measures, AIDS patients in California and the Northeast get more money per capita than those in the South, where activists are lobbying for a bigger share.
With hundreds of millions of dollars at stake, Congress is attempting for the first time since 2000 to amend the Ryan White CARE Act of 1990. It is named for the Indiana teenager who died that year after contracting AIDS from treatments for hemophilia.
"We haven't seen the money shifting with the epidemic. I don't believe a person should be punished because of where they live geographically, and that's what's happening," said Kathie Hiers, head of AIDS Alabama, a nonprofit group that provides housing and other services to HIV/AIDS patients.
Dollar disparities between cities and rural areas have been exaggerated, counters Phil Curtis of AIDS Project Los Angeles. To Curtis, "This remains largely an urban epidemic."
The federal law sends about $2 billion a year to local and state programs that give health care, drugs and other aid to the uninsured or those needing help on top of Medicaid or private insurance. Theses services reach more than 500,000 people per year, making it the largest federal program specifically for people with HIV.
"It's served as a lifeline to so many people with HIV who would not have gotten services elsewhere," said Jennifer Kates, HIV policy director at the Kaiser Family Foundation.
The law gives money to states as well as to 51 "eligible metropolitan areas" with concentrations of AIDS patients.
A study by congressional investigators last year found that states with eligible metropolitan areas get the most money because some patients essentially are double-counted — once to calculate the eligible metropolitan area and again in statewide totals.
Congress is seeking a way to distribute money more fairly without suddenly depriving any one area of dollars. The House Energy and Commerce Committee, which handles health issues, plans a hearing Thursday on reauthorizing the Ryan White act.
Depending on how the law is changed, California and New York stand to lose about $20 million each; Southern states could gain millions. Activists from the big states are hoping lawmakers will find a way to add money for all parts of the country.
"I think the issue is how do we get those areas of the country up to a level that they can offer the same resources, without diminishing the resources available in the most impacted areas of the United States," said Michael Montgomery, chief of California's Office of AIDS.
There are more than 1 million people in the U.S. with HIV/AIDS, and they are living longer because of improved drug regimens. New York and California are home to the most AIDS patients.
When the disease is measured by cases per 100,000 residents, California is no longer in the top 10. Several Southern states move into the top rank, including Louisiana and Georgia.
Also, minorities account for a growing proportion of AIDS cases. Nearly 50 percent of new AIDS patients are black, compared with 30 percent who are white and 20 percent who are Hispanic, according to the Kaiser Family Foundation.
Congressional investigators found that the way money is distributed has led to great disparities in per-patient spending. For example, in 2004 a patient in California got $5,264, compared with $3,657 for a patient in Alabama.
"New York and San Francisco get all the funding," said Richard Williams, 32, an HIV-positive resident of Birmingham, Ala., who uses Ryan White funds to help pay for his medications. "Birmingham's a little city and we hardly get anything. That's not fair."
Activists and lawmakers in California and the Northeast say that analysis ignores factors such as quality of care and cost of living, and it does not measure all the grants made under the law.
"Big cities have more cases," said Richard Eastman, 52, of Los Angeles, who was diagnosed with HIV in 1994. "Sure, maybe some little town in Biloxi, Miss., or something might have 50 or 100 cases, but Los Angeles has 57,000 people in the system that we know about."