The largest and longest-running study to investigate the impact of HIV on women in the United States marks its 20th anniversary this month. Findings from the Women’s Interagency HIV Study (WIHS) have helped define how best to treat HIV-infected women in the United States and globally.
The National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, established the WIHS in 1993 in response to a dramatic increase in AIDS cases among women in the United States. Since then, the WIHS has enrolled a total of 4,137 women who were HIV-infected or at risk for acquiring HIV, and has published more than 550 scientific papers. In so doing, the study has charted the course of HIV disease in treated and untreated women across the United States through detailed clinical, biological, neurocognitive, and behavioral assessments; comparisons of HIV-infected and uninfected women; and studies of HIV-infected women receiving treatment.
The scientific accomplishments of the WIHS include assessing how genetic, metabolic, behavioral and other factors influence HIV disease progression. The study also has generated information on the health effects of other viruses in HIV-infected women, including herpes, hepatitis C and human papilloma viruses. These data have helped clarify how such co-infections impact the course not only of HIV disease, but also of cardiovascular, liver, and kidney disease; cervical cancer; diabetes; lipodystrophy (the redistribution of fat) and neurocognitive disorders. And the study has demonstrated that economically and socially disadvantaged women will volunteer to participate in intensive, long-term clinical studies and make important contributions to medical research.
Today, nearly 2,120 women participate in the WIHS. More than 1,100 volunteers died from AIDS or other causes and 917 dropped out of the study. About 70 percent of the current participants are infected with HIV, and nearly 90 percent of those infected have taken antiretroviral therapy. The women are largely from minority groups, with 58 percent black, 28 percent Hispanic and 14 percent white. Roughly half of the participants live in poverty. These demographics of the WIHS volunteers reflect those of the HIV epidemic among women in the United States.
Every six months since 1993, WIHS volunteers have made study visits to sites in Chicago, Los Angeles, New York City, San Francisco and Washington, D.C. New study sites were established this year in Atlanta; Birmingham, Ala.; Jackson, Miss.; Chapel Hill, N.C.; and Miami, while the Los Angeles site was closed. WIHS staff interview women about their health and behavior and conduct clinical and laboratory tests, and the data and specimens gathered during these visits are confidentially stored and managed in a central database in Baltimore and a repository in Frederick, Md.
Since 1993 NIAID has continuously funded the WIHS in partnership with the National Cancer Institute, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the National Institute on Drug Abuse, all part of NIH. The National Institute of Mental Health recently became a funding partner.
NIH thanks the WIHS staff, scientists, and most importantly the volunteers, whose commitment and dedication over the past two decades have made the accomplishments of the WIHS possible.