ADAP fund officials predict shortfall that threatens lives of HIV patients
Congress can fix funding shortage with a $90 million infusion
The latest antiretroviral treatments have been so successful that the demand for such drugs may exceed what can be funded under the present Ryan White funding programs.
Unless Congress infuses about $90 million in the nation’s AIDS Drug Assistance Programs (ADAP), funded through Ryan White Title II, then some states may have to start cutting off new enrollment for HIV drugs and others may have to restrict drug access to those already receiving ADAP-funded drugs, charges Bill Arnold, co-chairman of the ADAP Working Group, a Washington, DC-based ADAP advocacy coalition that consists of AIDS advocacy organizations and pharmaceutical companies.
It’s not that Congress has ignored ADAP funding, which actually increased substantially from $285.5 million in FY 1998 to $461 million in FY 1999.
"Congress has been relatively generous with the ADAP program because of the positive impact of HIV treatment," says Arnold Doyle, MSW, research associate with The National Alliance of State and Territorial AIDS Directors in Washington, DC.
"Congress sees ADAP as a worthwhile fund for improving health care, lessening deaths, and decreasing mortality, while keeping people productive longer," he says.
Funding can’t keep up with growing numbers of patients
But the problem is that funding increases have had trouble keeping up with the rising numbers of HIV patients — numbering 40,000-plus new infections a year — and with the increasing costs of antiretroviral drugs.
While antiretroviral therapies have become more effective in recent years, they also cost more. When ADAP was founded in 1987, the first approved anti-HIV drug, zidovudine (AZT), cost about $10,000 per year. Now drug therapies that include protease inhibitors can cost $12,000 to $15,000 per year.
"What we’re saying is, there will be a $90.2 million shortfall if the trends continue the way we see them, and the pharmacological model we use has been extraordinarily accurate," Arnold says.
Plus, HIV patients are living longer and therefore staying on the medications longer, which also pushes up ADAP’s expenses, Arnold says. "Add all those things up, and in the course of a year, you come up with a number essentially in the millions."
States struggle to fund costly treatments
Tens of thousands of HIV-infected people have relied on federal and state funds to help pay for the costly antiretroviral drug treatments in recent years. While Medicaid is the largest provider of health care funds for HIV patients, covering 90% of all HIV-positive children and 50% of all people with HIV, state ADAPs have filled the gap of paying for drug therapies for people who earn too much money to qualify for Medicaid.
ADAPs set income eligibility in terms of the federal poverty level. Some states fund up to 100% of the poverty level, which is $7,890 per year for one person; a few states fund up to 400% of the poverty level.
Given enough money, ADAPs also would fund medication adherence programs and drugs to treat opportunistic infections, in addition to giving clients access to the newest and most effective drug therapies, Doyle says.
"In the last several years, the programs have certainly improved in terms of providing a wider array of antiretroviral drugs," Doyle says. "But there are some shortcomings, depending on the resources in a state."
Since protease inhibitors hit the market, some states have shut down ADAP funding to new enrollees and restricted access only to a small percentage of the working poor. Last year, 26 states cut ADAP services or faced budget shortages, according to the 1999 National ADAP Monitoring Report, which is a joint project of the National Alliance of State and Territorial AIDS Directors and the AIDS Treatment Data Network.
State ADAPs served 53,765 clients in June 1998, a 23% increase over the 43,494 people served in July 1997, according to the report. And 40 states had increases in the numbers of ADAP clients between July 1997 and June 1998. States that reported increases of 50% or more included Alaska, Delaware, Iowa, Kansas, Missouri, Ohio, Oregon, South Carolina, and West Virginia. The District of Columbia also reported increases of 50% or more.
At the same time, ADAP drug expenses have grown even faster, with 18 states reporting increases of 50% or greater. Nationally, per-client ADAP expenditures rose by 12% between July 1997 and June 1998, the report says.
States took drastic measures in 1998
Faced with increasing numbers of clients and rising drug costs, many states had to take drastic emergency measures last year, including the following:
• Eleven states capped program enrollments and maintained waiting lists for new ADAP clients.
• Six states had waiting lists for access to protease inhibitors or other antiretroviral drugs.
• Arkansas and South Dakota did not cover any protease inhibitor treatment because of budget constraints.
Ironically, the ADAP Working Group’s call for more federal Ryan White Title II money comes at a time when most state ADAP programs finally have received enough funds from both state and federal sources to get rid of their drug waiting lists and reopen enrollment to new patients.
In Florida, for example, the state legislature injected an additional $8 million into the state’s ADAP program, bringing its total funding to more than $60 million in FY 1999. (See ADAP funding chart, p. 99.) In 1997 and 1998, the Florida program had an HIV drug waiting list of about 2,000 people, says Joseph May, manager for the Florida ADAP program in Tallahassee.
This year, the list is gone; the state now provides drugs for about 8,300 people; and the program has expanded to include people who have incomes at 300% of the federal poverty level. Previously, Florida had a 200% poverty level cut-off.
"The bottom line is, we’re in a much better position financially than we were a year and a half ago, but we’re not ready to say we’re adequately funded," May says. "If we lost some federal funding, that would be a serious reversal and could make an immediate crisis for us."
ADAP money pays for drugs for people who have a medical diagnosis of HIV and who are low-income as defined by their states. Participants’ incomes can range from about $8,000 to more than $30,000 for a single person. About 60% of people with HIV/AIDS receive treatment through Medicaid. But not all state Medicaid programs fund the entire antiretroviral regimen for HIV patients.
The Florida ADAP might even expand further, if the money remains available, May says.
"We focus on HIV-fighting drugs, but if someone has HIV or AIDS, they could have a variety of medical needs, and that goes beyond direct HIV treatment. What we’d like to do is look toward expanding our drug formulary," May explains. "We’re also very concerned that there could be pockets of people out there in Florida who are not aware of our program."
NC injects $8 million into ADAP
North Carolina is another example of a state that has turned around its funding problems after a troubling period from September 1997 to November 1998 when the ADAP program had to close to new enrollees because of a lack of money.
"We had to scrounge for money to provide services to people who were already enrolled in the program," recalls Arthur Okrent, manager of the AIDS Care Unit ADAP, which is part of the North Carolina Department of Health and Human Services in Raleigh.
Then, the state passed a budget in November 1998 that sent more than $8 million to ADAP. The state received more federal money, as well. According to ADAP figures, North Carolina is one of the few states that actually provides more money for ADAP than it receives from Ryan White Title II funds.
The additional money has enabled the program to pay for drugs for about 1,500 people. If the program is permitted to raise its criterion of a net 125% of poverty level, which equals a $10,500 income after taxes, then there’s enough money to pay for drugs for about 2,200 people, Okrent says.
For now, North Carolina will study its HIV problem to see how the money can be used most effectively.
"We’re in the process of beginning to study a number of issues relating to disease progression from HIV to AIDS, and we’re looking at issues about adherence to treatment and if there’s any way to increase that," Okrent says.
Other states also have struggled to provide medications and other services through ADAP in recent years. Here’s a thumbnail sketch of what several states have experienced:
• Mississippi: Mississippi’s ADAP came out of a financial crisis in recent years, but only after the state contributed $750,000 to the program. The crisis resulted in a 200-plus waiting list for HIV medications, and a few people lost services. Like with other states, the financial problems were caused by the advent of protease inhibitors and multidrug regimens.
"When the National Institute of Health’s recommendations came out urging wide use of the three-drug cocktail, including protease inhibitors, ADAP officials approached the state legislature seriously for the first time for funding for AIDS drugs," says Robert Hotchkiss, MD, director of the state office of community health services in Jackson.
Mississippi ADAP officials also took a closer look at the state’s ADAP enrollment, looking for people who would qualify for Medicaid drugs. They found that a number of people had not picked up their HIV medications in more than six months. When they asked these people to renew their enrollment, a large percentage of them dropped out of the program, which freed up money for new enrollees, Hotchkiss says.
More available funds — now no waiting list
The state funded up to 200% of the poverty level at that time. Now the state funds up to 400% of the poverty level and has 500 enrollees. There no longer is a waiting list.
However, the state still has one problem, which is proving chronic: There are too few providers qualified to treat HIV patients, Hotchkiss says.
"With protease inhibitors, it requires someone with infectious disease qualifications or someone who has had special training in managing these very different and complex regimens," he says. "So that’s where we’re placing our efforts right now — to try to identify those individuals who are qualified but are not seeing AIDS patients, and we’re trying to work with others to try to obtain the training necessary to see AIDS patients."
• Colorado: Colorado’s ADAP had been running low on funds for three straight years, even though the program received more money from both Ryan White Title II and from the state legislature, says Karen Ringen, executive director of the Governor’s AIDS Council in Denver.
"But each year that we got more money, our need went up even more than the money we got," Ringen explains. "Our clients increased; the drugs each client needed increased; we weren’t able to keep up with the demand."
Colorado’s ADAP offers antiretroviral treatment to more than 800 people who meet the criteria of having incomes up to 185% of the poverty level, which is $14,000 for one person.
Despite the program’s financial difficulties, the state has never had a waiting list, largely because pharmaceutical companies helped provide free drugs when the program had a shortfall.
"We ran into deficits in the past," Ringen says. "We felt this therapy was so important that we couldn’t have a waiting list and say to someone, We can’t help you.’"
The program is solvent, at least for now, thanks to the state’s infusion of about $1.2 million.
If there is a change in federal funding, the state could run into trouble again, Ringen says.
"The money we have will get us through March, and then we’ll have to evaluate what the client population is at that point," she adds. "In the past, the pharmaceutical companies have been very generous, and we would hope they would continue that help if there is another crisis."
• Illinois: The Illinois ADAP ran into trouble in 1996 but never instituted a waiting list, says Nancy Abraham, ADAP administrator for the Illinois Department of Public Health in Springfield.
"Illinois was one of the first states to run into funding problems, and then the state gave us an additional $5 million," Abraham says.
Illinois now has sufficient funding to serve the 1,600-1,700 people it helps each month with up to four HIV drugs. The state funds up to 400% of the poverty level, which is an income of $32,960 per year for one person.
• Connecticut: Connecticut is another state that has never had a waiting list for ADAP drugs. Currently, the funding cutoff is set at 300% of the poverty level, which amounts to a $24,720 annual income for a single person. The state has about 960 people receiving HIV drugs through ADAP.
"We have been given a permissive legislative mandate of increasing [the income criteria], and it’s in the discussion phase now of when and how we’ll be able to implement that," says Bette Smith, AIDS Program Coordinator with the Connecticut Department of Social Services in Hartford.
The state also is exploring the possibility of using ADAP money to fund insurance that would pay for medications, which is an option that has been pursued by some other states.
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