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Problems for Women with HIV

Summer '94

When women come for prenatal or primary care, they're often given a stack of papers to sign. Among the things they are signing for is, in fact, an HIV test. When their test comes back positive, they are traumatized and in shock. They've had no pre-test counseling. They had no information that they were even being tested. Women don't dare to question the clinicians, because they assume that if they don't passively go along with the program, they won't get good pre-natal care. For most pregnant women getting tested for HIV is not a voluntary choice.

When women find out that they are infected, they do not react with action or anger, the way that many people who have support, knowledge, and expectations react. Instead, women react with shame and guilt: "What did I do to deserve this?" "What have I done to my children?" Women respond with "What's the matter with me?" instead of "What's the matter with a society that allows this to happen?" Most women, especially poor women, have never benefited from the system in any real sense: be it economic opportunity, education, or access to health and social resources. Women figure that they have nothing coming, while others respond with: "The system owes me some help and some resources".

Being Women Means

In this culture, in this country, being women means that you take responsibility for everybody and everything. The result of this social situation is that women are always going to be last. So, it's "Me last" rather than, "Me first." If a woman has to visit a spouse in one institution, & she has to take a sick child on the bus to another institution, she has symptoms herself and she's worn out; that means she doesn't get around to dealing with her own illness.

Emergency Rooms

Women who have limited education and resources aren't accustomed to using the health care system. Women's primary care is in public clinics with long lines and strange rules. Care comes too often through emergency rooms. Too many women are still ending up being admitted to emergency rooms and dying within a month of an AIDS diagnosis. A fair proportion of them are postpartum diagnosis. They come into the emergency room & they don't make it out. Women still don't recognize what alternatives there are for them. There's a critical difference between women getting into care and empowering them to become active participants in their own care. There are very limited alternatives to emergency services for women. Many become medical emergency cases, due to physical abuse, when they reveal their HIV status to a partner or ask a partner to use a condom. There are few resources for battered women who are drug users. Battered women who are sex workers cannot get into a shelter, even if there's a slot open. This is a major barrier for women who have HIV or are at risk in this epidemic.

Drug Using Women

Most of the drug programs that we have are for men with heroin addiction. For many women, heroin isn't their drug. They use a lot of other drugs. They certainly use crack cocaine. There are just not enough programs that are designed to deal with that pattern of drug use. The majority of the few drug recovery programs that do exist for women almost always require women to choose between keeping their families together or obtaining treatment. If mothers have to give up their kids to get into a treatment program, what kind of choice are we giving women that is real for them?

Women who don't use drugs are truly hidden. They feel stigmatized. There are few specialized support groups for them. Gay men's agendas are very different. Women are concerned about making arrangements for their families, or finding housing, or about becoming poor, if they aren't already. Many have lost insurance benefits when their spouse died. All of these are family issues. The few groups that do exist don't provide transportation or child care; without these, women cannot access support or any other services.

No Place To Turn

There is no place to turn to get coordinated information. We really need to improve our communication services for women who are facing this disease. Being a poor, uneducated, disenfranchised woman is not a very good place to start from when one is seeking information, support, or help. Information and support must start from that point. Information must be relevant and understandable to us as women. This will invigorate women. They will become knowledgable and perhaps angry, which will allow them to move forward. Now, when women find out that they are HIV positive, they are immobilized and isolated.


There is no system-wide eligibility. Each program has separate criteria. The system has to recognize that AIDS is a family disease for women. Many of the mainstream AIDS service organizations claim that they are servicing women. With considerable publicity, they announce that they are implementing programs for women! Most of those programs consist of one event or one support group and often the program is not relevant to the needs of women with AIDS. A limited number of women can take advantage of the one or two programs that do exist, but it is hardly enough. If you're a drug user in a treatment program you can get information. If you are a gay man there are tremendous resources available to you. If you are a woman who is neither of those, there is no path, there is no system in place that is accessible.

Some of the text for this article was taken from testimony presented to the former National Commission on AIDS in 1991. Unfortunately much of this is still a reality for the overwhelming majority of women living with AIDS today.

The following article; Coming Out of Isolation demonstrates how women are beginning to respond to the AIDS crisis in 1994.

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