11th International AIDS Conference Vancouver, British Columbia — July 7-12, 1996

Int Conf AIDS 1996 Jul 7-12; 11:231 (abstract no. Tu.B.175)
Parks VE; ACT UP Golden Gate, Women Organized to Respond to Life-Threatening Disease (WORLD), Community Constituency Group of the ACTG, AIDS Clinical Research Center, San Francisco, CA, USA. Fax: 415-648-2758.

ISSUES: Historically, women of childbearing age have been excluded from clinical research. Although HIV has dramatically affected this population, only in the last few years have HIV+ women and activists successfully begun to eliminate gender-based exclusions. Despite these efforts, the percentage of women enrolling in clinical research is still relatively low. Assumptions are made by researchers and advocates alike, however nobody has simply asked HIV+ women what they perceive as their barriers to research.

PROJECT: As an HIV-negative treatment advocate for women and children, I wanted to ascertain what factors encourage or discourage the enrollment of women in trials. Through personal contacts and announcements in community based newsletters, a convenience sampling of 100 HIV+ women currently residing in the United States were recruited for a survey regarding clinical trials. The survey includes demographic information, questions regarding factors thought to encourage/discourage enrollment, as well as opportunities for women to express in their own words their opinions regarding research.

RESULTS: Preliminary data suggest multiple barriers for women who do not participate in clinical research including obvious ones such as time, transportation, and child care. Some women also cite more complicated reasons: preference of alternative or traditional medicine, mistrust of research, and concerns regarding experimental drugs. Women who decide to participate in research also do so for varied reasons including disease progression, a desire to contribute to our knowledge, access to therapies or healthcare.

LESSONS LEARNED: Whether researcher or advocate, to successfully encourage the enrollment of women in research, one must actively listen to the needs and concerns of women. While some barriers to research can be easily addressed, others will be more difficult to resolve but should still be considered in the enrollment, informed consent, and design of clinical trials.

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TuB175

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