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Your Survey -- Your Results

Summer 1997

Thanks to all of you who responded to the "Women Want to Know" survey that appeared in our Winter 96/97 issue. Completed surveys are still coming into the office, but we'd like to share the preliminary results with you as they appeared in a poster session at the 1997 National Conference on Women & HIV.


Protease inhibitors were approved on the basis of conclusions made from data collected almost entirely from men with HIV/AIDS. Few, but some research efforts included only small (clinically insignificant) numbers of women.

Are the efficacy, safety and tolerability of these drugs different for women? Women with HIV/AIDS want to know.


Project Description

The survey was a joint project between two small community based organizations of and for HIV positive women, Women Alive and Women At Risk. It consisted of a two-page mail-in questionaire that was featured in the Winter 96/97 issue of the Women Alive newsletter. The data on 58 women was collected between January & March of '97 and was analyzed with EpiInfo 6.0.

Project Results

Protease inhibitor (PI) experience of the women who responded fell into three groups:

  • 34 women taking PIs currently,
  • 9 formerly took PIs but can no longer do so, and
  • 15 of the women have never (yet) taken a Protease Inhibitor.

Of the 15 who have never used PIs, two said they wanted to but were unable to get them. Twelve of these 15 women are on combination therapies with other drugs but no protease.

Of the 9 who cannot tolerate any PI at present, 8 had switched to a second PI before discontinuation of therapy.

Of the 34 women who are currently using PIs, 10 have had to stop PI therapy at some time in the past and 8 have switched from one PI to another.


Viral load reductions and T-cell rises were dramatic for the women who took Protease Inhibitors and nearly as great for other combination therapies. Nearly half (20 out of 43) of the women who started Protease Inhibitor therapy had to stop taking them, temporarily or permanently.

Fourteen women reported having menstrual changes while taking PIs, and others felt their hormones levels were affected. Only 7 had their hormone levels checked.

Female specific side effects represented a large number of the total of all side effects women reported having.

Of the 34 women currently taking PIs, 7 reported skipping doses "several times a week" and 10 reported skipping doses "once a week or less"; the remainder report complete compliance.


This small, exploratory study supports the inference that women appear to respond as well as men to the new therapies, but have extra problems with tolerability. The study had many limitations. Among them it's non-representative sample, small sample size, and reliance on "self-reports" only. There was a high rate of temporary or permanent discontinuation of Protease Inhibitors. The increased risk for drug resistance is an important reason for medical researchers to ascertain how the management of these new therapies can be rapidly improved for women.

Finally, this study underscores the urgency of collecting much more clinical data on the pharmacotherapies in women, both before and after FDA approval.

More Information

As more surveys are returned to Women Alive we will be forwarding them to a researcher in New York for stratification. We hope to publish our more complete findings on your experiences as HIV+ women in the near future.

The survey is available on the World Wide Web at Copies of the survey are also available by calling the Women Alive Hotline: 1.800.554.4876. A spanish version is available through the Treatment Advocacy program at Bienestar. 213.660.9680.

Special thanks to Phoebe Barnum who helped to design the survey. Thanks to Walt and John who worked on the preliminary results and designed the poster.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.