ADAP funding and Ryan White Act renewal is delayed by hurricane
ADAP funding and Ryan White Act renewal is delayed by hurricane
HIV patients from disaster areas spread across U.S.
The AIDS Drug Assistance Program (ADAP) already was in trouble financially, particularly in Southeastern states, when Hurricane Katrina wreaked devastation in Louisiana, Mississippi, and Alabama, making matters worse.
"The current funding outlook is very, very bad," says Bill Arnold, director of the National ADAP Working Group and executive director of the Title II Community AIDS National Network, both of Washington, DC.
"It's going to be a rough month, two, three, four, five," Arnold adds.
HIV/AIDS funding is as bad as it can be, says Gary Rose, public policy director for the Title II Community AIDS Network.
"People think everything is going to be solved with the reauthorization of the Ryan White Care Act," Rose says. "But the way the care act is structured, the problem is with appropriations."
Congress has been slow to do any work on the Ryan White Care Act, so AIDS groups expect a much later reauthorization than is desirable, says Murray C. Penner, deputy executive director of domestic programs for the National Alliance of State and Territorial AIDS Directors (NASTAD) of Washington, DC.
"What we need is a bill in the House or Senate to respond to, and we don't have anything yet," Penner notes as of mid-September. "We don't have a signal as to which direction things are going."
While some of the disproportionate problems experienced by Southeastern states could be alleviated with some changes to the act, but without additional funding the changes only will make things worse for other areas of the country, Rose says.
Among the states with major ADAP funding problems and ADAP waiting lists are North Carolina, Alabama, Kentucky, and Arkansas, Rose says.
"Also, Tennessee will be a mess because they're closing up TennCare, so a large number of those people will flood into ADAP," Rose adds.
In a revised Ryan White Care Act, the pie of funding will shift from Title I cities to the states that have no Title I cities, but have HIV problems, and this means San Francisco would be the hardest hit, unless funding is increased, Rose says.
"We've been forced into a position that in order to keep people alive with drugs we have to scavenge money from other programs that are doing people good," Rose says. "This is because we're not going to get enough money to do what needs to be done."
President George W. Bush had decided not to renew the $20 million presidential AIDS initiative, which was bringing antiretroviral drugs to hundreds of people who otherwise would lack access to help, Arnold says.
"Those people will have to be phased back into local ADAPs, which is problematic because they already have people on waiting lists," Arnold says.
North Carolina's ADAP has relied on the presidential initiative to support HIV medication for 792 people, says Steve Sherman, AIDS policy/ADAP coordinator for the North Carolina Department of Health & Human Services in Raleigh, NC.
"We've been advised that it's likely those dollars will run out sometime later this fall," Sherman says. "The hope is that most or all of those clients will be able to be transferred back into the state program."
However, the North Carolina ADAP already has 220 people on its HIV drugs waiting list, and the state's General Assembly has made available an additional $1 million, which won't go far enough in providing drugs to all who need them, Sherman says.
Meantime, North Carolina is one of the more than 25 states receiving the first wave of transplants from the areas devastated by Hurricane Katrina, and some of these people likely will be HIV infected and need someone to provide their medication.
Within 10 days of the hurricane's strike, the Texas ADAP had provided antiretroviral drugs to 25 HIV-infected people who had fled the Gulf Coast, says Dwayne Haught, ADAP manager at the Texas Department of Health in Austin, TX.
"From the first day of the evacuation, I worked out a deal with the drug companies to provide product reimbursement for eight weeks, and after that I'm hoping the Federal Emergency Management Association (FEMA) or the American Red Cross will have systems in place for HIV clients," Haught says.
The Texas state legislature committed $15.2 million in additional ADAP funding for the fiscal year 2006-2007, but the demand continues to exceed available funds, Haught says.
"The cost of medicines keep increasing, and the intensity of usage by clients is a big challenge," Haught says. "We have more people on medicines than ever before, and while it used to be three medications per person, now it's four or five."
Also, there's far less turnover among ADAP clients than there used to be, he says.
"We have a waiting list for the drug Fuzeon, which has a cap of 50 clients, and we have 50 on the drug and 50 on the waiting list," Haught says. "We're always a dog chasing its tail."
Most of the hurricane evacuees are from Louisiana, which has a more generous ADAP program than the one in Texas, Haught says.
"In Louisiana, they get eight drugs a month," he says.
Out of concern that disaster victims receive their antiretroviral drugs as quickly as possible, the Texas ADAP simplified the application process to make it a one-page qualifier. Among the first people to be given antiretroviral medication were those who were organized enough to bring with them their identification materials, including ADAP cards and drug bottles, Haught explains.
It takes a little longer to find qualify the HIV patients who arrived with nothing and whose knowledge of their treatment may be little more than reciting the color of their pills, he says.
"For those clients who don't have any information, we have them reassessed rather quickly by an HIV-savvy physician, and then we get them on medicines," Haught says.
With 14,000 Texans already receiving assistance from ADAP and with the state's budget already contributing 40 percent of the ADAP budget, it would be very difficult for the state to handle any additional HIV clients without national assistance, Haught adds.
The National Association of People With AIDS (NAPWA) of Washington, DC, issued an alert two weeks after New Orleans, LA, was flooded, blasting the federal government for not making immediate provisions of emergency Ryan White funds to assist the estimated 32,000 HIV-infected people from the hurricane-devastated states.
"Valiant AIDS service organizations from the affected states are operating in exile in hotel rooms and makeshift offices," says Terje Anderson, executive director of NAPWA.
"Organizations in neighboring states are providing care and treatment for evacuees, even without identified financial resources," Anderson says.
But the problems faced by the states taking in disaster victims may be eclipsed by the troubles experienced in the states devastated by Hurricane Katrina.
In Louisiana, where the state's ADAP was based in New Orleans, the ADAP staff were scattered across the country, and no one was able to return to the building to salvage records within the first couple of weeks after the hurricane, Arnold says.
"The ADAP people are the poorest of the poor," Arnold says.
"ADAPs in affected states are starting to get HIV medications to evacuees, but even before this disaster, Alabama's ADAP had 500 people on a waiting list, and the rest of the affected and neighboring states were already filled to capacity," Anderson says.
No one can predict how many people will return to their home states and whether there will be records of their ADAP enrollment if and when they do, he adds.
"And what does it mean to have ADAP clients moving to other states?" Arnold says. "If the California ADAP has 18 more people, then that's not a problem, but what if Montana's ADAP has 18 more people? That's a problem."
The bigger issue regarding AIDS treatment funding is how Congress and the president will react to the reauthorization of the Ryan White Care Act, which was due at the end of September, 2005, and to pleas for additional funding when faced with unprecedented emergency fund needs after the hurricane and flooding at the end of August and beginning of September, experts say.
"We definitely think there should be more money [ADAP], and we definitely think the $10 million included in each of the Senate and House funding bills is completely inadequate," says Christine Lubinski, executive director of the HIV Medicine Association (HIVMA) in Alexandria, VA.
What's needed is emergency supplemental funding through hurricane relief, Penner notes.
"We are working in a coalition to get some set-aside in [Health and Human Services (HHS) funding] to trickle down to Ryan White programs," Penner says.
Although most of the emergency relief money will focus on the emergency itself, there's a good case to be made that state ADAPs, which are picking up the burden of hurricane victims who've relocated, should receive some emergency funding, as well, Penner adds.
Others agree.
"We've been told there are no additional resources available, but now we need to respond to the very urgent needs of people in those hurricane areas," Lubinski says. "And one part of the response should be an infusion of significant resources into the ADAP program generally and in ADAP specifically in affected states, including those directly affected by the hurricane and those states where people are now hanging out for who knows how long."
HIVMA and other AIDS organizations will explore the possibility of including additional HIV funding in disaster relief bills when they are able to meet again with their congressional champions, Lubinski says.
"As a practical matter, that may be the only potential vehicle for a funding increase for HIV services in the short term," she says.
Also, HIVMA and other AIDS groups will lobby Congress to stop the train that's pushing for a $10 billion cut in Medicaid funding over five years, Lubinski adds.
"The Republican leadership is moving forward, and those cuts were in large part based on tax cuts the administration and leadership have asked for," Lubinski explains. "We always thought that was a completely unacceptable trade-off, and in the context of this disaster, it's nothing short of outrageous."
AIDS groups are very concerned about Medicaid cuts because those will have a trickle down impact on Ryan White programs when individuals who had been receiving their HIV medications and health care through Medicaid are now forced to find for themselves or be added to ADAP waiting lists, she adds.
In addition to concern about ADAP funding, AIDS groups are looking closely at what happens with the Ryan White Act reauthorization because of the way changes to it could impact AIDS spending and programs.
So far the administration's principles regarding Ryan White provide no definitions for terms such as primary medical services or core medical services, and how these are defined would greatly impact what type of treatment HIV patients would receive, Lubinski says.
"One thing we're going to do is educate policymakers about our definition, which is a broad definition of core services," Lubinski says. "And also our recommendations speak to the continuing importance of services in the Ryan White Act that we don't want to see go away."
The AIDS Drug Assistance Program (ADAP) already was in trouble financially, particularly in Southeastern states, when Hurricane Katrina wreaked devastation in Louisiana, Mississippi, and Alabama, making matters worse.Subscribe Now for Access
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