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Feature Bitter pills 

How will funding changes affect SA’s ability to care for its poorest AIDS patients?

When County Judge Nelson Wolff announced that Bexar County’s AIDS funding would soon be under new management, the San Antonio AIDS Foundation had this reaction: “It can’t be worse.”

That’s not too surprising, considering the history of the County’s AIDS funding. The Bexar County Commissioner’s Court has administered local CARE Act funds since 1998, during which time it has repeatedly drawn criticism from the AIDS community for mismanaging the fund and failing to use all of the federally allocated dollars. Yet, just as the County seems to be more efficient at running the program, Wolff proposes to shift the responsibility to the Alamo Area Council of Governments, which administers grants and programs for its 12 member counties, including the Clean Air Plan, Alamo Regional Transit, and Homeland Security. The question looms: Will AACOG be able to build on the County’s progress, or will the move once again throw the program into disorder?

Jill Rips, associate director, San Antonio AIDS Foundation (Photos by Mark Greenberg)

“We think it’s got to be a good thing,” says Jill Rips, AIDS Foundation associate director. “There’s a learning curve, and they don’t know our clients, but we’ve got to give them a chance — I don’t know that the County ever got it, so really, it can’t be any worse.”

But it could be better. Outside of Medicaid — which could take a $12 billion cut in the coming weeks — the CARE Act is the U.S.’s largest provider of AIDS-specific funding. Locally, it provides $6.7 million annually in medical and social services for 2,200 of San Antonio’s poorest HIV/AIDS patients. This year, the CARE Act is up for reauthorization in Congress, and while President George W. Bush has supported reauthorizing the Act, he is suggesting changes to its funding formulas that could cost Texas $2.5 million. Bexar County could lose up to $3.9 million — more than half of what it receives — but its patient caseload is expected to remain the same or increase.

These changes come at an ironic time. December 1 is World AIDS Day. Around the globe, AIDS advocates will campaign to raise not only funding, but also compassion and awareness: 8,493 people still die each day from the pandemic. This year, the World AIDS Day theme is “Stop AIDS. Keep the Promise,” an appeal to policymakers and governments to follow through on commitments to fight the AIDS epidemic.

• • • • •

In the winter of 1984, Ryan White, a Kokomo, Indiana, teenager, contracted AIDS from blood products he had received as part of his treatment for hemophilia, a disease that prevents blood from clotting.

According to White’s 1988 testimony before Ronald Reagan’s Commission on AIDS, the doctors gave him six months to live. A self-proclaimed fighter, he decided to return to school; he wanted to be with his friends and enjoy a normal life for as long as possible. It would not be that easy: The school board, the principal, and his teachers voted to keep him out of school, falsely believing that AIDS could be contracted through casual contact. Even after the Indiana courts decided he could return to school, White suffered ridicule and prejudice. Students accused him of biting and spitting on them and wrote “Fag” on his locker. The school administration insisted he use a separate restroom and drinking fountain, and that his eating utensils and trays be thrown away after meals. At the same time, between missing work to care for White and the high cost of his medical care, his mother, Jeanne, struggled financially.

White’s predicament gained national media attention. After a made-for-TV movie about his life, The Ryan White Story, was produced, the Whites were able to leave Kokomo and resettle in neighboring Cicero, Indiana, where the community — and the school district — welcomed him. During his speech to the President’s Commission on AIDS, White advocated for AIDS education and talked about how he was earning good grades and learning to drive. “I’m feeling great. I’m a normal happy teenager again ... I’m just one of the kids,” he said.

White died in 1990 at age 18. That year, congress passed the Ryan White Comprehensive AIDS Resources Emergency Act. Funded at approximately $2 billion a year, the CARE Act is the largest AIDS-dedicated federally funded program in the U.S. It gives appropriations money to clinics, hospitals, and community-based organizations to provide health care and social services for 577,000 low-income, uninsured, and underinsured HIV and AIDS patients — roughly half the people infected with HIV/AIDS in America.

• • • • •

Two years ago, Bexar County’s CARE Act program had such a bad reputation for mismanagement that even Wolff has admitted the Commissioners Court could not have given away the job of administering it.

In 2002, the County’s Department of Justice and Human Services, which manages the fund, came under fire from local HIV/AIDS agencies because, starting in 1995, the department had failed to spend or reallocate $1.6 million in CARE Act funds. Although the federal government allowed the county to reclaim the funds, the mistake resulted in a $70,000 reduction in federal funding the next year. “We eventually got the money back, but we had two months to spend it,” explains Rips. “It couldn’t be spent on salaries, but people bought equipment and stocked up on drugs. We all went short for those years — we could have spent the money then, but we were totally unaware of it.”

In 2003, the mistake resulted in a $70,000 cut in federal funding. The County again underspent its $3.4 million budget by $463,000. HIV/AIDS agency officials called for the County to fire the program’s coordinator, Ana Resendez. Judge Wolff reportedly wondered aloud if the County was the proper entity to run the program, and asked Joe Castillo, Department of Justice executive director, to examine the structure of his staff. But the program — and Resendez — stayed put. `Resendez stayed in her job until this past summer, when she moved to the City’s Public Works department.`

The CARE Act program continues to have problems. Last August, Bexar County’s Ryan White Planning Council, an elected board of AIDS/HIV agencies, patients, and consultants that prioritizes services and allocates CARE Act funding, discovered that the 2004 client services statistics Resendez reported to the federal government were incorrect. “We aren’t usually privy to all the data,” says Rips, “but this year Don `Sharitz, the CARE Act program’s new coordinator` handed us the forms, and we saw that it was all wrong. I don’t know if she sent bad numbers other years.

“People say, We are getting reimbursed on time, don’t rock the boat. But it’s not just about getting reimbursed, it’s about service to the community,” Rips adds. “We need good statistics to ensure that the money is applied well.”

“People say, We are getting reimbursed on time,

don’t rock the boat. But it’s not just about getting

reimbursed, it’s about service to the community.”

– Jill Rips, associate director,
San Antonio AIDS Foundation

The County’s reporting problems are an example of what makes the CARE Act difficult to administer. Within the five counties served, there are nine service providers, including the Veterans Administration hospital, University Hospital, and several community-based clinics, each with its own system of tracking services and client statistics. Adding complexity, the federal government has its own guidelines for gathering statistics.

This year, the State of Texas purchased an internet-based system that eventually will standardize patient and services statistics, but it’s still a work in progress: There are already 500 duplicate entries, and not everyone has been trained to use the system. The AIDS Foundation enters its statistics into two programs, including an outdated DOS-based system, because none of its employees know how to extract reports from the State’s new program.

Castillo says that reporting is an issue for CARE Act programs across the country, and that he is passing on a healthy organization to AACOG. For the last two years, the County has spent more than 99 percent of its alloted CARE Act funds. “We’ve got it in a fairly good place, it’s stable enough to move, and now AACOG can take it and really improve on it,” Castillo says.

Tracy Talley, director of the University Health Center’s AIDS clinic, which receives the largest of portion of County CARE Act funding, says she has never worked with AACOG, but the fact that the program is now stable may be a reason it should stay put. “We have spent a lot of time training Bexar County,” she says. “I hope there’s somebody over `at AACOG` that understands health care. There are some basic functions that `the CARE Act program` requires, such as planning for services.”


HIV and AIDS cases

39.4 million men, women, and children are living with HIV/AIDS
4.9 million new HIV cases were reported in 2005
3.1 million people died from AIDS in 2005
One half of the people who become infected with HIV will do so before age 25 and will die from AIDSbefore they are 35
In Africa, AIDS has orphaned 12 million children
Of the 6.5 million people in need of active antiretroviral drugs, 5.5 million will not receive them

1 million men, women, and children living with HIV/AIDS
40,000 new HIV cases reported in 2005
18,000 people died from AIDS in 2005

Bexar, Comal, Guadalupe, Wilson County
2,193 men, women, and children living with AIDS
311 new cases of HIV cases reported in 2004
65 deaths from AIDS reported in 2004 (Bexar County only)
Thru 2004, 2,340 estimated cumulative deaths from AIDS

Funding through the Ryan White CARE Act

Annual funding, U.S. $2 billion
Number of patients served, U.S. 533,000
Annual funding, San Antonio $6.7 million
Number of patients served, San Antonio 2,200

Of those who receive funding through the Ryan White CARE Act:
1 in 2 live below the federal poverty level
Fewer than 1 in 10 have private health insurance
Almost 28 percent were enrolled in Medicaid

Yet, Talley says the County’s support of the CARE Act program has always been limited. “I was the Chairman of the Planning Council for five years and I never met the Judge `Nelson Wolff`, who was the CEO of the program,” she says. “The message was, Be quiet, do your thing, and don’t tell us about it. When the City had it, it was the same thing. It’s a very conservative community, so AIDS is not high on the radar — diabetes is higher on the radar.”

Sources on the Planning Council say that Wolff asked AACOG Executive Director Al Notzon to manage the CARE Act program in 2003, but Notzon declined. Wolff and Notzon say that’s not accurate. “At the time, he asked us to look at it and, working with the staff, find ways to improve the efficiency,” says Notzon. “We’d rather continue to help out as consultants, but when they came back and said they’d still like us to take it, we said that if the board says yes, we’ll look at it.”

Wolff says now is the time to shift leadership of the CARE Act program: Castillo is retiring, and Wolff wants the Commissioners Court to focus on criminal-justice issues. “But the primary reason is that Al Notzon will be able to provide better service. AACOG works with most of that region,” he says. “Ryan White is not just Bexar County, so they have a much better overall reach than we have already; it just makes more sense to do it there.”

Notzon says he doesn’t believe his organization’s lack of health-care experience will be an issue. “We don’t have much direct experience with Ryan White or with AIDS in particular,” he says, “but the medical services are really delivered by the contractors; our expertise is in contract management.”

Notzon points out that AACOG also has considerable experience with grant management. In addition to providing its member governments with technical assistance on state and federal grants, AACOG’s own $25 million budget includes state and federal grants, and other public and private funding. Its 200 employees have acted as adjunct staff to member governments on a diverse set of regional programs, from administering 9-1-1 services to publishing air-quality alerts to managing elder-care coordination.

And, AACOG won’t reinvent the wheel: Notzon says the County plans to transfer some of its staff with the CARE Act program, “so there will not be a loss of institutional knowledge or experience.”

“I’m no Pollyanna. What we are most concerned about is the potential for budget cuts,” Notzon says. “I don’t anticipate that it will be an easy task, but since we are a service organization, it’s not something you say no to — you just run it the best you can.”

• • • • •

The CARE Act is reauthorized every five years. This year, President Bush’s guidelines for reauthorization call for funding to remain relatively level, as in previous years, but they would significantly change how the funds would be administered.

Castillo’s department has written letters to Congress opposing the proposed changes, one of which would prohibit states from including AIDS patients in major metropolitan areas in their eligibility counts. This provision is intended to eliminate double counting of patients between the CARE Act’s Title I (County) and Title II (State) funding. Yet, each is funding a different set of services and many patients will qualify for both. The provision would result in a $2.5 million reduction in Texas’ Title II funding, which would adversely affect drug-assistance programs and support services, such as dentistry, transportation, and food.

Title II services are already underfunded. According to the AIDS Foundation, the County runs out of dental services money every year, yet many of the first physical manifestations of HIV infection are found in the mouth, and AIDS patients are more susceptible to oral herpes and fungal diseases.

President Bush’s guidelines also stipulate that cities with fewer than 2,000 AIDS patients over a five-year period will no longer be eligible for Title I funding from the CARE Act. Because this provision does not take into account HIV patients, San Antonio would lose up to $3.9 million in Title I funds, which provide medical care, including hospice, psychological services, and skilled nursing.

Under this proposed change, the AIDS Foundation would lose $772,837 in Title I funds, roughly 35 percent of its annual budget. “It would be devastating,” says Rips. “We would have to close our inpatient `hospice and skilled nursing` unit, and those patients would have nowhere to go — the University would have to give them beds, so it would be devastating not only for us, but for the community.”

The unit usually carries 28 patients, which may not sound like a lot, but unfunded-AIDS-patient care is expensive: At the AIDS Foundation, it costs $125 a day to care for a patient; at the University Health Center, $470. That’s $4.8 million a year for 28 patients.

• • • • •

If all goes well, Notzon says AACOG will take over the CARE Act program in March, at the end of its funding cycle. By then, Congress should have reauthorized the program, but Notzon says that AACOG will be an effective advocate for future funding. “The good thing about representing 100 governments and agencies is that it lends weight when you start writing legislators,” he says. “Someone who is accountable to the community has more credibility asking for funding, so I’ll work through my board.” Senator Leticia Van de Putte is a member of AACOG’s board, as are several mayors, council members, county commissioners, and judges.

The AIDS community is looking to AACOG to improve accountability in the CARE Act program. “I would hope AACOG would try to keep administration costs down,” Rips says, “because every dollar that goes to administration is a dollar that doesn’t go to a patient.” By law, up to 10 percent — $670,000 this year — of the county’s CARE Act funding can be allocated for program administration.

Planning Council support is also an issue for the HIV/AIDS agencies, says Rips, who would like the council to include more outside consultants who understand the CARE Act but have nothing to gain from its funding allocations.

Michelle Durham, Beat AIDS executive director, agrees. She says the Planning Council is too cliquish, and that women of color often quit because “they don’t feel like their voices are heard — it’s like they’re tolerated because they’re part of the quota.”

Durham says the Planning Council needs better data, so that it can target services for “the hardest to reach, rather than status quo for the people already in care,” and strong leadership, “so that people understand their roles, and can communicate to the agencies how they are supposed to carry out the intentions of `the CARE Act` and the Planning Council.”

The County’s CARE Act program may not be in duress, but it needs work. It remains to be seen if AACOG can “keep the promise” better than the County. “I don’t know what to think,” says Durham. She has never worked with the organization, and the County hasn’t done much to sell AACOG outside of the Planning Council. “I just pray they catch on quickly,” she says. “And that whatever procedures they have are similar, so we don’t have to revamp all of our spreadsheets.”

By Susan Pagani

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