ADAP woes deepen as budgets worsen and longevity improves
Could see capped enrollment, smaller formularies
Ever since the AIDS Drug Assistance Program (ADAP) faced the challenge of funding highly active antiretroviral treatment (HAART) in the late 1990s, there have been annual funding problems that resulted in some states capping enrollment, restricting drug formularies, and putting some HIV-positive clients on waiting lists.
But those typical annual problems are expected to escalate into a crisis in the second half of 2003 as state Medicaid cuts, flat ADAP funding, and double-digit increases in eligible clients have led to major ADAP shortfalls, ADAP officials say.
"If we don’t get emergency support, we’re talking about an AIDS community that literally will have sick people everywhere who can’t access drugs," says Bill Arnold, director of the ADAP Working Group in Washington, DC.
For the past three years, the federal ADAP budget has had a rapidly growing shortfall, which in FY 2001 climbed from $60 million short of what was needed to a projected $146 million short of what is needed in FY 2003, Arnold told the House Appropriations Committee and Subcommittee on Labor, Health & Human Services & Education at a May 7 hearing.
The ADAP program needs an extra $282 million over the 2004 budget to prevent waiting lists from growing to several thousand people, he says.
"We need an emergency supplemental [funding] just like states with tornadoes and the war in Iraq and last year for the farmers for bad weather," Arnold says.
A variety of factors are contributing to the current crisis:
- The number of people who qualify and need ADAP medications continues to increase as HIV-infected patients live longer and new HIV cases increase.
- State funding for ADAPs has remained flat for many states, and federal increases do not make up for the shortfalls.
- HIV patients who have lived a long time with the disease sometimes need more expensive medication regimens, including the newly approved fusion inhibitor Fuzeon, and treatment for hepatitis C, which impacts a large proportion of HIV patients.
- When states cut Medicaid funding and lower eligibility for Medicaid, more HIV-infected patients end up without insurance coverage and become newly eligible for ADAP, which also increases the ADAP caseload.
Earlier this year, GlaxoSmithKline and Pfizer Inc. announced they would freeze the prices of their antiretroviral drugs for two years to help state ADAPs.
Even so, the states, which typically provide a small portion of ADAP funding are struggling with budget deficit problems that make the situation even worse.
"We’re looking at a range of problems associated mostly with state budget cuts," says Murray Penner, director of care and treatment programs for the National Alliance of State and Territory AIDS Directors (NASTAD) of Washington, DC.
For example, some states are making large Medicaid cuts at the same time that ADAP budgets are funded without increases. This pushes some HIV-positive people off Medicaid and onto ADAP lists.
"ADAP is a final safety net," he says. "So once people get off these other federal programs, they don’t have other places to turn to except ADAPs."
Since ADAP is not an entitlement program, it depends on federal appropriations each year, Penner adds. "It’s going to be a really tough year. We’re looking at some of the largest programs and some of the most important ones in the country with major shortfalls, especially California."
NASTAD listed in the spring more than 20 states with current and anticipated ADAP funding problems serious enough to result in capped enrollment and waiting lists, prescription limits or formulary reductions, imposed cost-sharing, or lowered financial eligibility requirements.
For instance, Alabama’s ADAP had a waiting list of about 100 people for the first half of 2003, and this situation could worsen later in the year as the state deals with a $500 million deficit, says Jane Cheeks, JD, state AIDS director in the Alabama Division of HIV/AIDS Prevention and Control at the Department of Public Health.
Alabama’s waiting list is nothing new, however. The state has had an ADAP waiting list for the past six years; and five years ago, there were 600 people eligible but unable to receive ADAP for a period of time, Cheeks says. "As we’ve gotten state funding in, we’ve been able to reduce the list."
North Carolina’s waiting list dropped from 170 to zero by summer, but that situation is precarious and not expected to last through the end of the year.
"We’ve gotten a slight amount more than we had anticipated under the Ryan White award, but despite that increase, we still expect serious difficulty this year," says Steve Sherman, AIDS policy and ADAP coordinator with the Department of Health and Human Services in Raleigh, NC. Also, North Carolina’s income eligibility limit for ADAP remains the nation’s lowest at 125% of the federal poverty level, he adds. "There have been efforts made to increase the eligibility level, but if we can’t serve everyone at 125% of poverty or if we can’t make more dollars available, then raising the eligibility level is not going to enable us to serve everyone."
While some states have had chronic shortfalls in ADAP funding, for others there will be a rude awakening if the current budgetary woes continue. "Medicaid cutbacks are going on at the state level to try to balance budgets, and that affects people who are not on ADAP but now will knock on the door of ADAP for help," Arnold says.
The states to watch for signs of impending ADAP crises include some that have the nation’s largest HIV populations, including California, Texas, Florida, and New York, he says. Earlier this year, the New York governor threatened to veto a budget that would temporarily avert an ADAP funding shortfall, and this is the sort of problem that many states are experiencing, Arnold adds.
Some smaller states may appear to have their ADAP crisis resolved, when in reality, they simply are ignoring the plight of many HIV patients who need ADAP drugs, he says. "Everybody thinks we can reduce eligibility, and the problem will go away. But the people who are HIV-infected don’t go away; they live down the street from you, and now they don’t have the medicine they need."
When this occurs, people who are infected and not receiving medication will end up getting sick and using the last-resort medical services of hospital emergency departments, Arnold says. "The one thing we know from our experience from 1985 to 1996 is full-blown AIDS untreated will kill a person in 18 months and cost the health care system roughly $150,000 per death," he explains.
This worst-case scenario would be a shift of the costs of HIV care to state health systems and public hospitals, which will, in turn, shift the costs to their insured patients and taxpayers.
"There will be increasing demands on county and state coffers to pay for bad debt or indigent care across the states," Sherman says. "And there will be increased demands on Medicaid because more people will be disabled."
Plus, everyone fortunate enough to have a job with insurance benefits will continue to see their premium costs rise as hospitals and health care providers continue to shift costs from Medicaid and indigent care to private insurers, he explains.
"The idea of raising taxes is not one that’s popular at this moment," Sherman adds. "I think the reality is we’re probably reducing our short-term expenses but increasing our long-term expenses, and that’s something the political system has to deal with."
Ever since the AIDS Drug Assistance Program (ADAP) faced the challenge of funding highly active antiretroviral treatment (HAART) in the late 1990s, there have been annual funding problems that resulted in some states capping enrollment, restricting drug formularies, and putting some HIV-positive clients on waiting lists.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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