Women's standard of care and research/treatment agenda

Why a women's standard of care?

As women living with HIV and as women's health activists, we know that HIV+ women need a standard of care, not only because their bodies are different than men's, but also because their lives are different.

A standard of care is a practical document you should be able to take into your doctor's office to help you advocate for good health care. Our women's standard of care will go beyond the medical management of HIV, and will (reflect the reality of the lives of HIV+ women.

Women with HIV are more likely to be low-income or poor, to be current or former drug users, and to be people of color. Women with HIV are more likely to put the needs of others before their own, to face day-to-day problems such as securing housing and food, and not to have access to good health care. A useful standard of care for women addresses HIV in terms of these issues.

In addition to covering the medical management of HIV disease in women, we will include information on interactions of common HIV treatments with the birth control pill and other drugs women might be taking, guidelines for exercise and how to reduce stress, and HIV management for current or former drug users.

Why a women's research/treatment agenda for HIV?

Many basic questions about HIV disease in women remain unanswered. After 14 years of this epidemic, we still don't know how HIV is transmitted sexually in women, nor do we know the appropriate dose of anti-retrovirals in women or their long-term effects. What little we do know about the way HIV looks in women did not come about by accident. Unrelenting activist pressure has brought victories, including a change in the Centers for Disease Control's (CDC's) definition of AIDS to include some women's symptoms and the inclusion of more women in clinical trials.

The largest prospective study to compare disease progression in women and men showed that women of all T-cell counts were more likely than men to die during the study period, although rates of disease progression were the same1. Substandard health care or none at all, violence, and poverty contribute to women's increased rates of death; these and other factors were on the horizon long before HIV appeared.
Our research/treatment agenda will critique existing research on women and HIV.

We will present an agenda for future research, dominated by the questions that most directly affect the lives of HIV+ women. Designed as an activist's tool, the research/treatment agenda will contribute to the fight for better research and health care for women with HIV.

1Melnick SL et al. Survival and disease progression according to gender of patients with HIV infection. The Journal of the American Medical Association 272 (24): 1915-1921. December 28, 1994.

The women's STANDARD OF CARE includes:


The women's research/treatment agenda reviews existing research,
and presents an agenda for future research on:

we need your help to complete the ACT UP/Philadelphia women's standard of care and research/treatment agenda:

___ I will comment on drafts of the documents.

___ I will contribute my knowledge as a woman living with HIV, a women's health activist, a health care provider, a researcher, or other expert.

___ I will join your advisory board of women living with HIV, and review drafts of the standard of care and research/treatment agenda to ensure that they fit the needs of HIV+ women.

___ I can contribute $____.00 to the women's standard of care and research/treatment agenda.

Name: Organization:

Address: Country:

Phone: Fax: e-mail:

Please send to:

Asia Russell,
ACT UP/Philadelphia
Box 15919
Philadelphia, PA 19103, USA,
Phone (215) 731-1844
Fax (215) 731-1845

for more information see ACT UP/Philadelphia

Back to Vancouver Index