Treatment Issues: Newsletter of Current Issues in HIV/AIDS - Volume 20, Number 1, 2 & 3, January / March 2006

To Whom It May Concern:

We are a group of women and men living with HIV who are concerned about the limited amount of information available on the effects of HIV drugs on women. We believe that research on women should be a high priority but that too many barriers prevent women from joining research studies.

In a survey of our Action Center members we find that women are willing to join clinical research studies but often run into problems that prevent them from participating.

• Enrollment restrictions on women of childbearing age. It seems that this is often used to exclude all women, including those who are unable to have children and women who are willing to use contraception. We find that if you have been rejected once you feel you are not wanted in any study.
• Women are especially concerned about unknown side effects that can hurt their bodies.
• The doctors and nurses who run clinical trials often don't explain what they are doing and seem unwilling to answer questions.
• Informed consent forms do not tell the whole story and can be hard to read. We need people at the research sites who are willing to talk through the study and patiently answer questions.
• We think that a clinical trial that was especially designed for women with HIV would be very attractive because we would feel more comfortable that our needs will be looked out for.

In conclusion, we are worried that not enough research is being done on the effects of HIV drugs on women. We are willing to participate in research on HIV drugs. But when we try to join clinical trials we are often made to feel we are not eligible — or not wanted — when our questions go unanswered.

Thank you for your attention to this important issue. We look forward to an answer to our concerns.

GMHC Action Center
Treatment Research Group

20060110
GM200107

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