Reminds me of the Tuskegee Syphilis Study

One of the most famous violations of human rights is the U.S. government's Public Health Service study of poor black men infected with syphilis which went on for 40 years and the researchers continued to study the effects of the disease even after penicillin was invented which could have cured them.

Now, fast forward from 1972 to 1993, to another deadly disease, and a "data set" made up this time primarily of poor black women. The WIHS, Women's Interagency HIV Study, (pronouced WISE) has resulted in 440 published research papers with a data base that can be mined for many more to determine the affects of HIV on (poor minority) women.

The population of 2625 women is 60% black and 27% Hispanic; less than 1/3 are employed; 2/3 report a history of physical, sexual, or emotional abuse. These women have a high smoking rate, high crack cocaine use, high alcohol and illegal substance abuse rate; they have numerous co-morbidities not realted to HIV such as cardiovascular disease, liver disease, cancers, cognitive disorders, and depression.

I've poured through the report, both as summarized in the July 21 issue of JAMA and the on-line site, and the newsletters (most very dated and containing recipes and weight tips on portion control) the participants receive. Through anti-retroviral drugs AIDS is no longer a fatal disease. This clinical study does not treat the women; it refers them for treatment. It offers them money for participation, child care for attending, transportation help, workshops, phone call reminders, and for a select few, a seat on the advisory board.

Well, whoop! Double whoop! Pardon me if I'm not impressed. If all participants were handed the pills and medical staff watched them take it (they do this in methadone clinics), and they were then in remission (there is no cure, but there is life extension), where would the studies be? Instead of being an HIV/AIDS study, and I think the women originally believed they would be treated, not just studied, it has become a data set for researchers (just like the Tuskegee study) for studying poverty, substance abuse, child rearing, and other diseases that may put these women at risk. It's also a study on why people may not follow doctor's orders or follow through on drug therapy--but at the cost of their own lives.

My question is this: How did a disease that began in a tiny demographic made up of privileged white men with higher than average education and income, become the scourge of the poor and black? Why, with 12% of the population, are blacks so affected, and black women? Ten years ago you could talk about "down low" sex, the practice of gay black men bringing the disease home to the wife/girlfriend and then to the children. But these days, that has become politically incorrect to even raise the issue. So you're left to your own devices by this study, JAMA (the American Medical Association's journal) the Gay and Lesbian Alliance, NPR, and any broadcast media, because they certainly won't tell you the truth.

Women's Interagency HIV Study