Hundreds of poor, uninsured people with HIV and AIDS in dozens of states are without access to life-sustaining medicines because state and federal funding levels can't meet the demand for service.
Several states are banking on a quick infusion of federal cash to deliver AIDS drugs to more patients, but the search still is on for a long-term solution.
Medical advances are helping infected patients live longer, but with the recent economic downturn, a rise in the number of uninsured and a greater need for public health assistance, more than 1,500 people in nine states are on waiting lists for their state's AIDS drug assistance programs (ADAP), according to an August survey by the National Alliance of State and Territorial AIDS Directors.
In addition, several other states have scaled back their AIDS drugs programs to save money by capping enrollment and limiting the types of medicine patients can receive.
States are waiting on President Bush to make good on a campaign promise he made in Philadelphia in June to provide an extra $20 million in federal AIDS money to eliminate states' waiting lists, but in the meantime, states must make do with a dearth of resources.
While North Carolina's waiting list is the longest numbering about 940 individuals Alabama, Alaska, Idaho, Iowa, Kentucky, Montana, South Dakota and West Virginia are also wait-listing eligible patients.
"The way to understand these waiting lists is that they are one example of the inability of the current program to meet all of the current needs," said Jennifer Kates, HIV policy director at the Henry J. Kaiser Family Foundation, a non-partisan research organization.
Kates said federal funding for these state-run AIDS programs has leveled off in recent years, but the number of patients seeking government assistance to pay for expensive HIV and AIDS drugs has continued to increase, outpacing the programs' financial resources.
Although enrollment fluctuates, ADAPs across the 50 states each year provide medications to about 136,000 people, representing about 30 percent of people estimated to be living with HIV and AIDS under care in the United States, according to Kaiser. ADAPs are known as "safety nets for the safety net," because they help low-income patients who earn too much to qualify for Medicaid government assistance and have no health insurance.
Every state, the District of Colombia and several U.S. territories run ADAPs, but they are discretionary programs and states have significant control over their structure. So funding, the number of clients enrolled, eligibility and benefits vary widely.
In addition to waiting lists, more than a dozen states have put other cost savers in place, according to the NASTAD survey.
Utah, for example, froze enrollment in the program and completely eliminated state funding for its ADAP. Other states, such as Idaho, reduced their budget contributions to the program.
Arizona and Indiana also stopped accepting new patients. Minnesota and Washington increased cost-sharing requirements, and Missouri, Oklahoma, South Dakota and Texas limited the list of prescription drugs that patients can access.
Massachusetts, Nebraska, New Hampshire, New Jersey and Oregon also might act to rein in costs by March 31, 2005, the end of their programs' funding cycle.
Health officials said that the waiting lists were a last resort, but that patients without coverage still have options. For example, Utah officials are encouraging residents infected with HIV or AIDS to sign up for private-sector pharmacy discounts given by drug manufacturers.
Congress first gave money to states in 1987 to help them provide certain, expensive AIDS drugs that were approved by the U.S. Food and Drug Administration. As treatment options expanded, ADAPs were later included under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.
The programs, which receive annual funding from Congress based on a formula, are often additionally funded with state dollars. More than 75 percent of ADAP clients are male and are largely minority; about one-third are African-American and one-quarter are Hispanic.
States haven't yet received the extra $20 million promised by President Bush to help patients on waiting lists before June 21. State AIDS directors and policy analysts said it is unclear exactly how and when the U.S. Health Resource and Services Administration will distribute the money to states.
"In terms of allocating (the money) to the states, the process is still in motion. ... It's a work in progress, but it's going to happen as soon as possible. They're working on it as we speak," said Judy Andrews, a spokeswoman for the federal health agency, who said she could not give a specific time frame or details about getting the emergency funding to states.
Since the June announcement, states have continued to add patients to their waiting lists, so the federal cash will be insufficient to cover all those who need medicine. Going forward, "the federal funding picture is pretty bleak," said Murray Penner, director of care and treatment at NASTAD. "We are certainly concerned that the appropriations won't meet the need."
States slotted to receive the federal bailout welcome the assistance, but don't think it offers a long-term solution. Although about a dozen Iowans likely will benefit from the federal funds, Holly Hanson, the Hawkeye State's ADAP manager, told The Des Moines Register June 28 that the move was "just a Band-Aid" fix.
In North Carolina, the additional money from the president's initiative would cover roughly 800 of the 940 people now on the state's waiting list, and an additional $2.7 million in state funds appropriated by the Legislature will help to cover the additional patients in limbo.
Steve Sherman, the state ADAP director, said large-scale layoffs in the state's tobacco and textile industries contributed to an increase in the state's ADAP rolls and the demand for state assistance in all public health programs.
There were some bright spots among the programs' setbacks. For example, the Colorado Legislature and Republican Gov. Bill Owens approved nearly $3 million for its ADAP starting July 1. The money, almost double the state's previous contributions, removed 325 people from a waiting list for drug assistance.
"It is important that these individuals receive the medications that they need," Owens said in a statement July 15. Scott Barnette, Colorado's ADAP director, said the medications help people live longer, healthier lives. "We see decreases in emergency room visits and hospital stays. Medications are just very, very important," Barnette said.
Many states still are nervous about future funding for their programs and are taking a wait-and-see attitude. Idaho ADAP director Linda Tomlinson said: "Unless there's more federal or state money coming in, I think it will continue to be a struggle because the price of the medications continues to increase."