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
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
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 latest treatment regimen for gynecologic diseases, including vaginitis,
PID, menstrual irregularities, HPV, and cervical cancer
- common HIV and OI treatments' interactions with drugs such as oral
contraceptives, street drugs, and anti-depressants
- a standard of care for mental health
- how to make your case manager work for you
- how to reduce effects of stress in your life
- women-specific treatment regimens for specific OIs, including wasting,
bacterial infections, and fungal infections
- issues related to transsexual and transgendered women living with
- a standard of care for pregnancy
- information for current and former HIV+ drug users, older women, and
- how to talk to your doctor
- management of HIV in prison
The women's research/treatment agenda reviews existing research,
and presents an agenda for future research on:
- gynecologic manifestations of HIV, including vaginitis, menstrual
irregularities, early onset of menopause, HPV, cervical cancer, and idiopathic
- OIs such as wasting, bacterial infections, and fungal infections
- pregnancy: the health of women and protecting newborns from HIV
- development of women-controlled barrier methods for secondary and
- pharmacokinetics and pharmacodynamics: how should research be structured
to determine gender differences in HIV treatments?
- transmission of HIV among women who have sex with women
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
Phone: Fax: e-mail:
Please send to:
Philadelphia, PA 19103, USA,
Phone (215) 731-1844
Fax (215) 731-1845