H.I.V. Patients Anxious as Support Programs Cut


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Jim Wilson/The New York Times

SAN RAFAEL, Calif. — In the golden hills of Marin County, it is hard to imagine that free food or emergency cab fares could matter much to anyone.

A cabinet filled with AIDS drugs that have become harder to pay for.

But for hundreds of people who were thrown into poverty by AIDS, like Wade Flores, 45, a former distributor for a chocolate company who lives alone and is getting sicker and weaker, recent cutbacks seem like a matter of life and death.

“These nonmedical services are what keep people like me alive,” Mr. Flores said.

Here and in many other cities, AIDS advocates say, changes in the distribution of federal assistance for indigent H.I.V. and AIDS patients are causing hardship and deep anxiety.

Congress rewrote the Ryan White Care Act in December in ways that expanded the regions eligible for money and allowed less assistance for support programs like meals and legal aid. Five new cities have joined the list of recipients, but without any increase in overall financing.

Because of strict limits on discretionary spending and the competing demands of other health initiatives, the Republican-led Congress and the Bush administration kept appropriations for the Ryan White program at about $2.1 billion over the last several years. At the same time, H.I.V., the virus that causes AIDS, spreads to an estimated 40,000 more people each year, more people are getting tested and seek care, and more patients live longer, requiring medicines costing thousands of dollars a month.

“We have a growing population of needy patients and a growing cost of care, and the funding is not keeping pace,” said Jennifer Kates, director of H.I.V. policy at the Kaiser Family Foundation. “If we have someone in South Carolina not getting medicines and someone in San Francisco not getting housing, how do we choose?”

But Republicans like Senator Tom Coburn of Oklahoma say that with the federal government spending more than $20 billion on AIDS treatment, prevention and research, a stronger focus on prevention and medical care is the main need, not more federal money.

Given the financing limits set by the White House and Congress, administration officials who run the program agree. “We want to make sure that the majority of Ryan White dollars are spent on medical services that can impact the clinical picture of people living with H.I.V.,” said Deborah Parham Hopson, associate administrator for H.I.V./AIDS at the Health Resources and Services Administration. Many regions face “tough decisions,” Dr. Parham Hopson acknowledged.

Patient advocates say that the Ryan White program meets vital needs that other programs do not — Medicaid coverage of care and drugs, for example, varies wildly among states — and that many of the imperiled side services are, as Mr. Flores suggested, nearly as important to patients as medicines.

Advocates say the program has been a godsend for hundreds of thousands of AIDS patients since it was established in 1990 as a “payer of last resort.” It provides aid to hard-hit cities for a wide range of medical and support services, and money to states to help pay for drugs.

“Ryan White is the safety net under the safety net,” said Murray Penner, deputy executive director of the National Alliance of State and Territorial AIDS Directors.

According to federal officials, nearly half the estimated 1.2 million people living with H.I.V. or AIDS are benefiting from Ryan White assistance, which is often passed to nonprofit groups, and one of every four people in antiviral therapy has some of the costs covered by them.

The reauthorization in December followed partisan and regional conflict over how to adjust to the changing nature of the AIDS epidemic, which affects more regions, increasingly afflicts women and members of minorities and has more long-term survivors needing aid.

Southern states with emerging problems argued that the cities where the epidemic began, like San Francisco and New York, were getting an unfair share. The new formula has spread money to five other cities — Baton Rouge, La.; Charlotte, N.C.; Indianapolis, Memphis and Nashville — for a total of 56.

With the pie sliced more thinly, 29 metropolitan areas lost money, compared with last year, while 27 are receiving more.

Among the major recipients, the San Francisco area, including Marin County, saw the greatest cut, 31 percent. Grants to New York City and Atlanta were cut by 7 percent and those for Newark, 9 percent. While the exact tally will change in August when money under a minority AIDS initiative is awarded, the dilution of money will remain.

On July 10, groups helping AIDS patients in New York received a letter from H.I.V. Care Services, which administers the city’s Ryan White money, detailing cuts in 14 activities including housing placement, legal services and nutrition aid.

In Connecticut, where Hartford and New Haven lost large sums, the state is providing some emergency help. But service groups have cut some 65 staff positions, said Shawn Lang, policy director of the Connecticut AIDS Coalition.

“It’s been pretty devastating,” Ms. Lang said.

San Francisco and Marin County have received temporary help from the state and local governments. Still, in Marin County food deliveries have stopped, money for emergency cab rides has shrunk and volunteer “buddy” programs are in danger, according to the Marin AIDS Project.

Mr. Flores, in San Rafael, has lived with H.I.V. for 20 years, but now the antiviral medicines have stopped working. The loss of food boxes and the cutbacks in free rides and other emergency money have left him poorer and more scared.

During his latest hospital stay the other day, he said, “If I decide to keep fighting this disease, I wonder if I’ll get the help I need.”