WORKING THE SYSTEM
What to look for in a drug trial.

"I get my drugs through a study and it feels good," says Beri Hull, senior community development associate at the National Association for People with AIDS. "I'd rather the drug companies pay than my insurance company, the government, or the public." As a former drug user coinfected with hepatitis C, Hull had two strikes against her when it came to finding HIV drug trials in which to participate. Since drug companies want their trial data to look as good as possible, they often set up strict inclusion and exclusion criteria. Hepatitis hinders liver function and may interfere with the body's ability to metabolize HIV drugs. Unoficially, streotypes about reliability and other issues may make some trials stear clear of former or current drug users.

Across the board, there's also an overwhelming tendency to test HIV treatments in "antiretroviral naive" patients, a category that may exclude women who've received a course of AZT during pregnancy. In some trials, pregnancy and breast feeding are exclusion criteria; and participants are required to use condoms or birth control. Still, Hull managed to find a three-drug trial that's supplied her HIV medication for the past two years, and she gets gynecological care through the Women's Interagency Health Study (see, "Standing Trial"), in addition to having a primary care physician. And when her clinical trial discontinued liver function tests after the first year, Hull acted up, complaining to the Institutional Review Board overseeing the drug trial, the principal investigator, and the drug company.

Sharon Henkel lives in rural Illinois and drives two hours round-trip to a trial site in St. Louis. Still, it's worth it. "The quality of care is excellent," says Henkel, who is also a member of the Adult AIDS Clinical Trials' Community Constituency Group. "I have CMV retinitis, so I get monthly eye exams and eye photos. [The] standard of care is every four months or twice a year." Both Hull and Henkel have learned to work the system to their advantage, signing up for clinical drug trials that provide care and therapies they're interested in. Hull urges every woman to take an educated consumer approach to selecting trials: Ask for the features you'd like to see-from child care and transportation to specific lab tests. Call your trial site's review board or your local AIDS advocacy group if you think there's something missing from a trial, and shop around for the trials that suit your needs.

-EB