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HIV/AIDS advocacy groups say increasing FY08 Ryan White funding will be another challenge
ADAPs, prevention, research suffer flat-funding, cuts
It's been difficult for HIV/AIDS advocacy groups to generate national attention in yet another dismal federal budget year about increasing HIV funding for the newly reauthorized Ryan White Care Act. But there are many signs that the need is at a critical point.
"The Ryan White Care Act has been inadequately funded for several years, and all parts of it have been under-funded, which has created gaps in access to care and treatment," says Ryan Clary, policy advocate for Project Inform of San Francisco, CA.
For instance, in South Carolina, at least four people have died while on a state waiting list for receiving medication through the AIDS Drug Assistance Program (ADAP). State health department officials will not comment on the deaths, but they do confirm that the waiting list, which started growing rapidly last summer, is now up to more than 500 people.
"We're waiting anxiously to hear what money we'll get under the new Ryan White Care Act," says Noreen O'Donnell, program manager for Ryan White Part B of the South Carolina Department of Health & Environmental Control (SCDHEC) of Columbia, SC.
"In theory, we should rank high because we have a waiting list of 512 folks," O'Donnell says.
South Carolina's ADAP problems have been building, but the crisis began when the last federal emergency ADAP funds, which gave more than $1 million to the state, were not renewed in 2006, says Karen Bates, co-chair of the South Carolina Campaign to End AIDS of Columbia, SC.
"Another problem is we have a rising need," Bates says. "South Carolina is consistently ranked in the top 10 in its rate of new HIV infections."
Other states with recent waiting lists are Alaska, Montana, and Puerto Rico. Alabama, Indiana, and Puerto Rico have capped enrollment in ADAP, and South Carolina reduced its formulary within the past year. Michigan has instituted formulary management, and Oklahoma has an annual per capita expenditure limit. Also, a number of states have limited access to Fuzeon and Aptivus, according to data collected by the National Alliance of State & Territorial AIDS Directors (NASTAD).
ADAP funding problems would have been more pronounced if it weren't for some states putting in a total of $51 million more to ADAPs and the one-time help from Medicare Part D drug benefit, which was worth between $100 million and $110 million, says Bill Arnold, director, the ADAP Working Group and TII CANN - Title II Community AIDS National Network of Washington, DC.
The reason South Carolina's ADAP is in such a crisis is because the state's funding for ADAP is very low at $500,000 per year, while some other rural Southern states chip in more than $10 million per year, Arnold says.
"It caught up with South Carolina," he says.
HIV/AIDS advocates have been meeting with South Carolina legislators, holding prayer vigils, talking with local media, and staging demonstrations and rallies to bring attention to the problem, Bates says.
SCDHEC estimates it would require close to $5 million in annual state funding to eliminate the current ADAP waiting list. State officials say there were 12,971 people diagnosed with HIV through mid 2005, and about 42 percent of these people were not receiving HIV care.
"Funding is an enormous issue, and that's the simple answer," O'Donnell says.
In January and February 2007, SCDHEC invited consultants to review the ADAP program and see if there were any areas that could be cut to maximize efficiency. The consultants reported that it was run very tightly, so no recommendations were made, O'Donnell notes.
"We're keeping our fingers crossed for a federal grant award, and we hope we get a bump in funding," O'Donnell adds.
As of early April, the state's HIV/AIDS activism had not yet resulted in an increase to state ADAP funding, although advocates have requested $8 million in recurring funds.
"Some of our legislators have expressed the notion that people with HIV got the disease because of bad behavior on their part, so why should we pay to give them medication," Bates says.
Bates responds to that sort of prejudice with the question of who exactly on the ADAP waiting list they'd like to see die.
"I know people who are on the ADAP waiting list, and one is going to Clemson University, and one is going to Furman University, and they're young and have their whole lives ahead of them," Bates says. "With the right treatment they can go on to graduate and lead productive lives."
In another example of how little South Carolina's leadership understands the epidemic and current treatment, one legislator shed tears after hearing an HIV-positive woman describe giving birth to a healthy, uninfected baby, Bates says.
"He didn't know that an HIV-positive woman could have a healthy baby, so he had a tear in his eye," she says.
While SCDHEC officials say they believe about everyone on the ADAP waiting list is receiving medical care and treatment, their medication typically comes from pharmaceutical assistance programs.
These require case managers to spend about 90 percent of their time filling out paperwork to obtain a month-by-month eligibility for clients, Bates says.
Also, since Ryan White funding for care providers also is woefully under-funded, one of the major providers in Charleston, the Medical University of South Carolina, had stopped accepting new, uninsured patients as of March 2007, according to SCDHEC. The other main provider, the University of South Carolina—Department of Medicine has had a shortfall for most of the year to cover laboratory tests and other standard-of-care services.
But even states that have provided millions to their ADAP programs will soon see waiting lists and other problems if federal funding remains flat, as it has in the past year, Arnold says.
State ADAPs have put up with several years of near-flat funding from the federal government, and so the money that was released on April 1, 2007, will not go very far, Arnold says.
"We went to the House floor and Senate twice, asking for emergency supplementals, but both failed," Arnold says.
Lack of interest on the Hill was due to budget fights toward the end of last year, and the anticipation of major political changes in Congress, which resulted in the previous leadership prohibiting all amendments and emergency funding through the end of 2006, Arnold explains.
Arnold and others are working with Congress to get more money in the FY08 budget, but the outcome is uncertain.
"I'm talking to several offices about it now to get emergency money because in the FY08 budget, the only ADAP increase is a $25 million increase from the president's budget," Arnold says. "But the president's budget is dead on arrival, and $25 million won't help us — it's about 10 percent of the $232 million we actually need."
President Bush's FY08 budget request is inadequate and shortsighted, particularly on the prevention side, says Ronald Johnson, deputy director of AIDS Action Council of Washington, DC.
The biggest increase in the president's budget is $93 million for HIV prevention and surveillance, but that entire amount is earmarked for purchases of rapid HIV testing kits, Johnson says. (See AIDS budget chart.)
"The overall prevention needs are huge, and they're not addressed by the president's budget request," Johnson says.
Another area in which the president requested a substantial increase — greater than the increase requested for ADAP — is in community-based abstinence education.
The $28 million proposed increase would bring abstinence-only funding up to $141 million, and this request was made while a variety of other programs, including research spending, substance abuse treatment, and mental health services would be cut by more than $460 million.
"We feel the abstinence-only education program needs to be completely defunded," Johnson says. "There are studies that show these programs are not effective, and so the money could be far more effectively spent in other areas."
The president's substantial increases to abstinence-only programs were supposed to be accompanied by new and peer-reviewed research into whether these programs work. The only study completed is being held by the U.S. Health Resources and Services Administration (HRSA) and has not been released yet, Johnson notes.
"Almost as we speak, there are meetings going on with staff about this," Johnson says. "We have had a full range of Hill visits around appropriations, and funding for abstinence-only programs is very definitely on the list."
Speaker of the House Nancy Pelosi has indicated her interest in seeking new funds for the Ryan White Care Act, and there are new Democratic members of Congress who have health care as a priority, Clary says.
"So we're optimistic we'll see increases," Clary says.
The reauthorized Ryan White Care Act ended up as a compromise that will send a little extra money to struggling Southern states such as South Carolina while not causing urban Northern states like New York and New Jersey to lose more than 5 percent of their current funding, Clary says.
"Now they'll count HIV cases and not just AIDS cases, so those with emerging epidemics will benefit from this," he says. "Nobody ultimately was very happy, but it looks like what you'd reach if you compromised among groups, and it was based on the assumption of very little increased funding."