Tight budgets, rising drug costs and medical advances that help people with AIDS live longer have forced a growing number of states to trim prescription drug assistance for AIDS patients and place at least 1,500 people in 10 states on waiting lists, according to a national survey released yesterday.
Even though federal spending on the AIDS Drug Assistance Program has increased, the money has not kept pace with soaring demand for the expensive drug regimens that have dramatically extended and improved the lives of people with the disease, said the annual report by the Kaiser Family Foundation.
A handful of patients in West Virginia and Kentucky died while on waiting lists, but officials said it was difficult to determine whether the drug program could have prevented those deaths. The majority of clients are nonwhite low-income men 25 to 44 years old.
In addition to creating waiting lists, some states have reduced the number of covered drugs or raised income eligibility levels to try to control costs, the survey found.
Nationally, about 136,000 people participate in the program, known as ADAP. Congress increased federal ADAP grants from $714 million in 2003 to $749 million this year. President Bush has proposed adding $35 million next year.
But with 40,000 new cases of HIV infection diagnosed each year and most people requiring medication for many more years, the need for free or discounted medicine is probably far greater than the waiting lists suggest, said Murray Penner, director of care and treatment programs of the National Alliance of State and Territorial AIDS Directors, which also worked on the report.
ADAP, created in 1987, is considered the payer of last resort because it serves patients who are uninsured and do not qualify for other government programs such as Medicaid. Federal money is distributed based on the percentage of AIDS cases in a state or territory. Because states have wide latitude on how much they contribute and what services are provided, "what you get depends on where you live," the authors wrote.
In North Carolina, medication is provided to people with annual incomes less than $11,000, compared with about $45,000 in Massachusetts, New York and Delaware. Last year, 11 states cut ADAP funding, two reduced the number of drugs provided and three limited patient assistance.
Few states have been able to afford the newest medications or to cover a full complement of AIDS drugs. Seventeen of the 57 states and territories in the survey provide the full set of 14 drugs recommended by the U.S. Public Health Service and the Infectious Diseases Society of America.
Kentucky's ADAP is in particularly dire straits, said Lisa Daniels, the program's director. She created a waiting list in February 2000 and has had one ever since. Last year, five people on Kentucky's waiting list died before they could be enrolled in the program. But the individuals were eligible for other prescription assistance, she added.
Locally, the picture was mixed. While the District and Maryland increased eligibility or money for the program, Virginia scaled back its efforts slightly.