Other routes to HIV drug assistance

When Steven Dimmick, 31, was diagnosed with HIV seven years ago, his doctors felt confident they could find a regimen of drugs to help him live a healthy life for many years.

The outlook got less rosy in June when Dimmick, a Florida hairdresser with an annual income of less than $30,000, found that he — along with thousands of other HIV-positive patients across the country — had been dumped from his state’s AIDS Drug Assistance Program (ADAP) and moved to a waiting list.

The programs, operated by individual states with mostly federal funds, generally cover the cost of antiretroviral drugs. “The program has been a mainstay of funding for HIV/AIDS drugs since it began in 1987, but ADAP is now in crisis,” says Jennifer Kates, head of HIV policy at the Kaiser Family Foundation in Washington, D.C.

An increase in demand since 2007 without adequate increases in state and federal funds — among other factors — has caused more than 6,000 patients in 11 states to be shifted to waiting lists for the program. Other states are likely to add wait lists in the future, says Julie Scofield, executive director of the National Alliance of State and Territorial AIDS Directors.

The programs are being stressed by people who lost jobs, and health insurance, during the recession and are now relying on ADAP for their drugs; a rise in drug costs, expansion of HIV testing, patients living longer; and new federal guidelines that recommend starting drug therapy earlier. Brandon Macsata, chief executive of the ADAP Advocacy Assn. in Washington, D.C., says there have been waiting lists of a few hundred patients at a time in previous years, but the numbers began to climb in 2009.

ADAP programs currently cover the cost of drugs for more than 160,000 patients, one-third of those on HIV/AIDS medications. Federal funding covered about 72% of the costs back in 2005, but as demand has grown, federal coverage has dropped to about 49%, and states have often not been able to keep up. A December report from the Center for American Progress, a liberal think tank based in Washington, D.C., says the program is underfunded by about $126 million, though some advocacy groups put the number closer to $180 million.

That, Scofield adds, means hardship for those who are excluded and don’t get medical coverage elsewhere: According to her organization, over 75% of ADAP clients earn less than twice the federal poverty level, which is $22,000 a year for an individual. HIV/AIDS medications cost, on average, $12,000 to $20,000 per year.

Ged Kenslea, communications head of the AIDS Healthcare Foundation, an AIDS treatment organization based in Los Angeles, says that patients worried about losing coverage for drugs may skip doses or split pills and so decrease the medication they take, which can increase the amount of virus in their bloodstream and pose a greater risk to those they could infect. “And,” Kenslea says, “people may choose not to get tested at all if they think they won’t be able to find a way to pay for their drugs.”

Nineteen states and Puerto Rico have made other program cuts, such as reducing the different drugs they make available. In Connecticut, the governor has proposed closing ADAP entirely. California currently does not have a waiting list nor cost-sharing.

The U.S. House voted on Feb. 18 to divert $42 million from federal agencies to help move patients off the ADAP waiting lists. Advocates are hopeful that the Senate will approve this funding source as well, though many fear this is a short-term solution.

Below are tips from experts for those facing difficulties obtaining affordable antiretroviral medications.

• Apply to ADAP even if your state has a waiting list. Being in the program probably makes you eligible for other assistance. Find contact information at https://hab.hrsa.gov/findcare/statehotlines.htm.

• If you’re on an ADAP waiting list, you can get drugs through a program managed by Welvista (www.welvista.org), a pharmaceutical patient assistance program. Welvista requires a faxed letter from an ADAP program stating that a patient is on a waiting list and a faxed prescription from a provider. It can typically begin providing drugs within 48 hours and continues doing so until notified that a patient has been reinstated in an ADAP.

• Not in an ADAP or on a waiting list? Apply directly to drug companies for possible assistance through such programs as Partnership for Prescription Assistance, run by pharmaceutical firms (www.pparx.org, 1-888-4PPA-NOW), and Needymeds, a nonprofit group (www.needymeds.org).

• Comprehensive state information on treatment assistance for HIV/AIDS is available from the National Alliance of State and Territorial AIDS Directors at https://www.nastad.org.

• Project Inform, an AIDS advocacy and information organization based in San Francisco, lists resources at https://www.projectinform.org/info/state/index.shtml.

• The Fair Pricing Coalition, a group of treatment activists, has information on pharmaceutical assistance programs and copay assistance programs at https://www.fairpricingcoalition.org/projects. If your income is too high for ADAP, you may qualify for help from these programs.

• POZ Magazine lists treatment resources at https://directory.poz.com.

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