Money Worries

Last March, David Jones became one of the 247 Travis County residents to be diagnosed with AIDS in 1995. At the same time he was told he had AIDS, he was also diagnosed with HIV, the virus believed to cause the disease. At the time, Jones didn't know the difference between HIV, which his doctor estimated he had been carrying for five years, and AIDS. His life has changed a lot since then.

"It was shocking," Jones says 18 months later. "It's still taking me a while to adjust." Since he was diagnosed, Jones has been hospitalized three times with pneumonia. He's had acupuncture treatments and massages to ease his pain, and has started a new drug regimen. And he has struggled with how to tell his teenage son about the disease.

But mostly his worries have centered around money. Since his illness forced him to quit his job at a grocery store, Jones has had to scrounge to pay his bills. He has become well-versed in how to access Medicaid. Rather than obsess about his own financial problems, Jones has become an activist by joining the Austin Area Comprehensive HIV Planning Council, an organization which looks at the larger picture of how AIDS and HIV services are funded in Austin.

That picture, for Jones and for many other people living with the disease in Austin, looks better than it does elsewhere in the state. "Of all the cities in Texas, I can't imagine living in any other one and having AIDS," says AIDS patient Clifford Ueltschey.

That's because, by most accounts, "Austin contributes more to AIDS funding by percentage than any other city," explains Casey Blass, the director of the HIV-STD resources division of the Texas Department of Health and Human Services. "Austin started funding before other cities, and it's sustained it."

But because AIDS funding is at the mercy of politics and changes in the way the disease is fought, there are reasons to fear for its future. And as a result, those who make decisions about funding in Austin are thinking hard about service priorities.

Travis County ranks second to Harris County in the rate of infection. In 1995, the Travis County rate of 51 infections per 100,000 population was about twice the state average. As of July 1, there had been 2,607 reported cases of the disease in Travis County since 1983; of those, 1,606 people have died. That number continues to rise. Service providers and patients are constantly mourning the loss of friends and clients. Phone calls to people in the AIDS-care community go unreturned for reasons such as, "I was at a funeral this morning." Agency directors are constantly revising their statistics for the number of clients with, "We lost one over the weekend." The number of newly diagnosed people is roughly equal to the number of deaths, so the number of people with the disease is fairly stable.

Jones, a 36-year-old gay black man, is typical of people living with AIDS in Travis County. More than half the people diagnosed with AIDS in each of the last three years in Austin have been people of color. Though women are increasingly at risk, the bulk of AIDS patients are still gay men. Over the period that AIDS has spread to more people of color than whites, its overall growth has slowed. People in their 30s are more likely to be diagnosed with AIDS than are people in any other age group. Those who are most likely to contract the disease now -- minorities and IV drug users -- are less likely to have access to care than those who received it decade ago. And the gap between those who are cared for and those who are not is wider now, because while the treatment is better, it's also more expensive.

Funding for AIDS and HIV services comes from several sources and it has risen steadily over the life of the epidemic. Federal, state and local government money distributed to AIDS service providers in Austin totaled $7 million in May 1995, more than twice the $3.3 million distributed in June 1992. Most of the money is allocated through contracts with service providers. Because the lengths and start times of the contracts vary, it's impossible to determine the total annual expenditures for AIDS and HIV services.

Since 1994, Austin has received federal Title I money from the Ryan White CARE Act, the source that changed the landscape for funding in the city. Title I money pays for services in cities like Austin which are disproportionately affected with AIDS. The federal government also supplies over $1 million a year for homes for people with AIDS through the Department of Housing and Urban Development. The state provides more than $700,000 a year to Travis County education and prevention efforts.

Texas also runs an AIDS and HIV drug program with a statewide budget of around $8 million, an amount that won't come close to covering the costs of protease inhibitors, the new drug that could make AIDS more of a long-term, chronic disease instead of the quick killer it has been. Jones credits this new class of drugs, which he began taking in June, for his quick weight gain since he reached a low of around 130 pounds during a bout with pneumonia that stretched from April until June. Now, he weighs 168 pounds, and looks healthy. He gets help paying for the life-saving drugs, which cost $1,000 per month, from Austin's Medical Assistance Program, through which the city helps low-income people pay medical costs. But Jones is concerned about the future of funding for the costly new drugs. "What's going to happen to me if the funding's not going to be there?" Jones says. "I'm just going to be another number, another fatality."

Budgeting for Success

When a drug works, the number of people using the drug rises, and their lives are prolonged. That adds up to radically increasing costs. Charles Bell, chief of the bureau of HIV and STD prevention at the Texas Department of Health, said his department has projected a cost of $12-14 million a year to provide protease inhibitors to all the Texans who need them and can't get them paid for elsewhere. Bell's department, which already spends $8 million annually on drugs for AIDS patients, has not requested additional state money for the new drugs, because it expects the federal government to come through with the needed cash.

But that federal funding, like all federal funding, is not guaranteed to come. And even if it does, it might not continue to meet growing demand. "President Clinton just increased the AIDS budget by $13 million, but that isn't keeping pace," says José Orta, executive director of Informe-SIDA, which specializes in providing assistance to HIV-positive Latinos and African-Americans.

Because of budget crunches everywhere, Bell says, his department must prioritize, which could mean taking away money that pays for other drugs used to treat the opportunistic infections that often strike people living with AIDS. "We would never not fund... protease inhibitors," Bell explains.

But although protease inhibitors have drawn praise from many within the AIDS-stricken community, that priority-setting suggestion has drawn fire. Stewart Gallas, the medical social worker at Christopher House, a hospital for people with AIDS, says the drugs that attack opportunistic infections are still important, even after the advent of drugs that attack HIV itself, and that he'd rather the new drugs not be funded than see the old ones cut.

On the local level, the city and county must, at a minimum, keep funding at current levels as a stipulation for receiving the federal Ryan White funds. Austin and Travis County provide a combined total of around $2 million a year for AIDS services, mostly through the Community Action Network, a body of politicians, city and county bureaucrats, school representatives and others that distributes social services money from both the city and county.

Some service providers have doubts about whether the city and county are maintaining their efforts as they're required to. "I don't know if there's someone you could call a bad guy in this. The city is trying to maintain funding," says Informe-SIDA's Orta. But he's not sure they're succeeding. The reason, he says, is that a definition of maintenance of effort has not been established in Austin. "And the city's been in a big crunch budget-wise," Orta says. The city money in the 1996-97 budget directed to AIDS services totals just over $800,000, which is $50,000 higher than last year. And there's AIDS funding included in other categories as well, such as city health clinics and the Medical Assistance Program, which makes the total hard to calculate. Hard Times Bring
Better Cooperation Planners are preparing for more tough decisions about priorities for the $2 million a year Austin and Travis County contribute to the fight against the disease. The HIV Planning Council, formed when Austin became a Title I city, sets those priorities for spending the $5 million in state and federal grants Austin receives annually. No one on the council -- which has about 30 members, including service providers, politicians, health experts, and nine people living with AIDS -- wants to say that part of the spectrum of care that Austin has attempted to provide should be cut in favor of other areas. But the council expects a time to come when such decisions must be made.

The HIV Planning Council is wrapping up its most comprehensive needs assessment to date. The report, scheduled to be released next month, is based on interviews with people living with AIDS and service providers, and research on epidemiological information from city and state sources, as well as patterns of utilization of services. All these factors have been studied to help set funding priorities.

As competition for grants becomes stiffer, service providers say they are working together more closely than they have since the Ryan White Title I funds expanded the amount of available grant money. Now, the executive directors are meeting through Austin Area AIDS Service Providers Network, or ASPEN. In July, that body, chaired by Christopher House executive director Carol Cody, had a retreat where one of the main topics was how to cooperate.

While cooperation means that individual directors may have lost some power in funding decisions, a lot of groups have gained a say. And now that the stupor of 1994's funding influx is over, several service providers say the agencies are cooperating better than ever. "It's a paradigm shift," Stewart Gallas explains, "from `How can my organization survive?' to `How can the agencies meet the clients' needs?'"

People with AIDS tend to be clients at multiple agencies, so the agencies are naturally linked. And referrals to other agencies are a big part of work for service providers. Informe-SIDA does case management for people of color who are newly diagnosed with HIV. Once they become symptomatic, Informe-SIDA refers them to AIDS Services of Austin (ASA) or elsewhere. In many testing centers, Jim Thurman's monthly newsletter Positive Threads is given to people who test positive for HIV. Jones himself is an example of that interagency cooperation: He is a client at ASA and the HIV Wellness Center for health care. He receives rent and utility bill assistance from ASA, CARITAS and St. Ignatius Church, and he recently won a scholarship for membership at the YMCA. That cluster of service providers is fairly typical. While the funding sources have changed over the course of Austin's history, patients say their needs have been met once they've entered the network of care providers.

One sign of relative contentment among patients is that Austin has never even sustained an organization for people with AIDS. Jones is chair of The Voice, the latest attempt at an organization for people with AIDS. But the group hasn't met for several months. Ueltschey, the group's secretary-treasurer, said the lack of an organization indicates that Austin cares well for its people with HIV and AIDS. "PWA [people living with AIDS] organizations last as long as they have an enemy to fight," he says. "It's hard to tell a group of people to focus on a common enemy. I think that's a pat on our back."