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Access to the "Cure"

Spring 1997

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

IT HAS BEEN KNOWN that women get AIDS since 1981, yet no funds were allocated to design a study on how HIV manifests in women until 1991. The government's definition of AIDS was changed in 1993 to include a few of the symptoms that women get. (Surveillance is done by the government (CDC) to count the numbers of AIDS cases based on the CDC's definition.) Funding for AIDS research and services is based on these numbers. Women were and sometimes still are dieing without being counted. So, if they don't count all of us, we don't get our fair share of the funds.


Money for Aids

Even today, research is not funded nor designed to look at clinical manifestations in women above the waistline. Although we are equally impacted by the AIDS epidemic, we are not researched equally, and therefore we do not receive equal care or treatment. Yet, many of us continue to want to believe that all things are equal in AIDS research, treatment and access to care. But, we are only fooling ourselves.

In many cases, Policy (legislation and laws) shapes the course in which women's research is directed. One example of policy driven research and standards-of-care for women, is the negative amendment attached to the reauthorization of the RYAN WHITE CARE Act Funds.

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Last year, when it came time for Congress to grant approval to continue funding AIDS services and care, the approval carried with it, a negative amendment. This was to say that in order for counties to receive federal dollars, they must test all pregnant women for HIV. This was proposed by a senator who was convinced that AZT prevented mother to infant transmission, based primarily on the media spin of ACTG 076 trial results. Due to community pressure, the language in the negative amendment was changed from mandatory HIV testing, to offering voluntary testing. Even this was not strong enough language to protect women from coercion. Many hospitals and clinics in cities and counties around the country are now routinely testing pregnant women for HIV, which is the same as mandatory testing. This violates a persons civil rights to choose HIV testing or not. So, basically everyone else besides pregnant women are responsible and smart enough to make the choice whether to get the HIV test when it is offered to them.

The most threatening thing about this legislation is that it has the potential for mandatory treatment of HIV positive women. Because now, counties must show a reduction in the numbers of HIV transmissions to infants in order to continue receiving federal dollars. Therefore, even though we know that monotherapy with AZT alone is outdated and not recommended for anyone with HIV in this country, this treatment regimen is still recommended for pregnant women, because the legislation for AIDS funding says that we have to reduce transmission even at the risk of creating drug resistant virus in women. (there may be a few individual providers who do not follow this protocol and prescribe combination therapy.)


Focus on Women

We have been lead to believe that the masses of women who are infected would benefit from existing AIDS research. But the truth is that we won't. Research for women is focused almost entirely on finding out how infectious we are to others.

In terms of finding out how infectious we are to our sexual partners, this question has been answered already. If women infected men, we would have large numbers of heterosexual men with HIV in this country. Yet, 17 years into this epidemic, less than 0.5% of the AIDS cases are in men who have contracted HIV heterosexually. Although we need scientific proof to begin to break down the stigma that we are vectors of disease, this research needs to be done with prevention funds. It is fundamentally about transmission of disease, not about women.

The majority of the research dollars ear-marked specifically for women are spent on perinatal transmission research. Although this is extremely important research, this type of AIDS research does not benefit the majority of women who are infected.

Perinatal transmission research must be funded. But, it should be funded with prevention research dollars which is a much larger pot of money than that which is allocated for women. The majority of women are not pregnant and are not planning to expand our families. Many of us are women who have already had children, or don't want to. We are women who need to know how HIV impacts our survival! After all pregnancy is a temporary state, and HIV is, so far, permanent.


Our Bodies

We still need to know how our bodies may react differently to the drugs, (studied almost exclusively in men), which we are asked to take. Still very few women are granted entrance into studies that could start to answer some of our questions such as: toxicity, dosing, side-effects, and some of the immunological differences in women with HIV disease. We can no longer allow ourselves to be lead to believe that AIDS research will be able to answer any of these questions for us. It is pathetic that women are so far behind in AIDS treatments, care and policy.

We need to begin the battle of demanding that limited research dollars be used to look at the health issues that ALL infected women will face at sometime in our disease. We need to begin to encourage policy makers to start advocating for the masses of women, to ensure that we will all benefit from the little bit of research that is being funded.

We fought for and got the Women's Interagency HIV Study (WIHS). But, it is not enough! Research and treatment for women with HIV has been ghetto-ized into our genital tract. It's not because there aren't any good researchers who want to look at us as whole beings. It's because the ones who do want to study us cannot get any funding. And when they try, they are denied, kicked off conference calls, uninvited to meetings and branded as trouble makers in the "good old boys" research establishment, which is governed by "good old boys" Policy makers who are persuaded by more "good old boy" lobbyists.

As women who are impacted by this disease, we must now take our involvement one step further. IF there is to be a research agenda that is scientifically sound and studies large numbers of women as whole beings, then we will have to be the ones to help create it. Because we are the ones who know better than anyone what we need. We will also have to be the ones to demand that it happens, to force the federal government and the research community to implement it.

No women specific treatment recommendations exist for any other condition that comes with HIV. We don't know how to treat this disease in women. Women do not have the same access to treatments or care. Who has access to the Cure? We need treatment recommendations and standards of care for women with HIV/AIDS. We need funding! and we need legislation and policy that will work in our favor.


Unite for Change

This will never happen, unless we find a way to come together as women infected and affected by AIDS and look beyond the realm of our own personal lives and our singular needs and start advocating on all levels for the benefit of ALL women with HIV/AIDS.

  • We challenge Donna Shalala of Health & Human Services, Eric Goosby - the acting AIDS Czar, Tony Fauci of the National Institute for Allergies and Infectious Diseases, and Jack Killen of the AIDS Clinical Trials Group to stop lying to women and fund the research!

  • Change doesn't happen by itself. We make it happen. It doesn't happen by going through "proper channels". Going through proper channels is an invitation to get lost in the maze of red tape. Change happens through mobilizations of communities to incite chaos and cause disturbances. Your voice can force change and save lives.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



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