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The "X" Files: Missing Information About Women

Fall/Winter 1997

I'm going to talk about how information on women with AIDS is reported and disseminated both to the community and to the general public, and why it's important to look at what isn't reported.

Face Value

We'll follow just tow examples of reports that people in general took at face value.

First the reports from the CDC on AIDS death Rates and how that information about death rates among women suddenly and somewhat mysteriously changed. Secondly the reports about AZT in Pregnant women, which resulted in very serious ramifications in terms of mandatory testing and in some cases mandatory treatment, and the continued practice of prescribing AZT monotherapy to women.



The New York Times, reports that death form AIDS drops for the first time ever. It's a turning point in the epidemic -- but for whom?

For over 12 years we experience a steady increase in deaths caused by AIDS. Death rates appear to reach a plateau between 1994 and 1995. And then in 1996, we all witness a long awaited dramatic decrease in the infamous "butcher-count".


The scenario however is significantly different for women. Death Rates are actually up, according to the CDC.

The main stream media and most community AIDS newsletters do not report about the differences in survival.

A women's AIDS newsletter, "WORLDS" reports about the death rate increase just prior to the 1997 National Women and HIV Conference.

For the most part, no one wants to hear the bad news, and the AIDS epidemic in women remains on the back burner and virtually hidden, until May at the Women's Conference.

At that conference, press-releases about the morbidity/mortality reports are generated by women and conference coverage is reported primarily by women as well. Many main-stream newspapers print articles related to information presented at the conference.

Women with HIV and their advocates stage a speak-out and demonstration and the Los Angeles Times covers the story.

Women on the Scene

It becomes apparent that when women are on the scene and analyzing the issues, the information that reaches the press is more relevant to women and perhaps more accurate from a woman's perspective.

Immediately following the Conference, main stream media publishes a story about the gender differences in death rates.

The women's conference was May 4, the Village Voice article, titled; "Dying of Curiosity, AIDS Deaths Down Among Men, Up Among Women" is published May 15. Two months later, the CDC comes out with a second analysis and with the help of AIDS Action Council, NEW statistics hit the press.

Second Analysis

A second analysis has been done over a 9 month period and states that death rates declined for women too., in fact they declined by seven %.

If the 7% increase in survival is accurate then there had to be a 10% decrease in deaths among women with AIDS within a three month period. And even though it appears that somewhat of a miracle took place in July, August and September of 1996, NO explanation what-so-ever is given for the reversal seen in the data.

The CDC attributes the overall decline in death rates to:

  • combination therapies and availability of protease inhibitors.

The CDC contributes the gap in survival rates among men and women to limited access to information and class & gender differences in access to treatments and care. ...NO study is cited to support this claim and there is no mention of equal access to clinical trials or the lack of AIDS research being done on women.

A Miracle

Again, what happened in those 3 months in 1996 when survival rates increased in women by 10%? Did all women with AIDS suddenly gain equal access to care and treatments?!

We can begin to see how the system disseminates information to the public:

  • The government puts out a press release,
  • the media codifies the statistics,
  • no one questions the source
  • and a new "truth" is born.
But what about the truth that hasn't been told?

Relevant News

A news story that is relevant to the lives of women with AIDS might look something more like this:

"In the race for the cure, women comprise 20% of people diagnosed with AIDS and less than 12% of AIDS Clinical Trial participants. Women's participation in studies leading to the approval of protease inhibitors was, in certain cases as few as 3% of all trial participants. However, women made up 19% of the delavirdine studies, which showed some antiretroviral drugs clear more slowly in women, possibly due to the impact of female hormones on drug breakdown.

AZT Monotherapy

Let's take a look back at some research that has been done in women. Everyone is familiar with trial 076. In 1991 the study started enrolling, in 1993 the results of an interim analysis are leaked to the press and hundreds of pregnant positive women across the country are given AZT monotherapy. How is it that a standard of care could be based on a single study? And what information is missing?

The National Cancer Institute finds cancer in pregnant mice who were given AZT and an increase in cancer in their offspring.

A seven fold increase in lung and liver tumors is noted, and so are uncommon vaginal tumors.

Press Releases

Glaxo, tries to down play the cancer issue with a study of their own.. Glaxo uses a different dose of AZT and finds no increase in lung or live cancer, yet finds the same vaginal neoplasm's in adult mice.

So who do we believe? The manufacturers of the product (AZT) or the national Cancer Institute?

At an NIH "Blue Ribbon Panel" meeting, the NCI and Glaxo studies are discussed. Before the meeting is over, Glaxo issues a press release claiming that the panel decides that the benefits of taking AZT "far outweighs the risks". Hmmmm?

The Washington Post picks up the story, encouraging providers to continue prescribing AZT to pregnant women. Mainstream AIDS community newsletters (such as Project Inform and Positive Living) follow, stating that "there is no cause for alarm".

Women Alive, a publication by and for women living with HIV/AIDS takes a different approach and challenges the standard of care.

Women Alive reports that:

  • since 1989, AZT is known to cause vaginal tumors,
  • Viral load may be a predictor of perinatal transmission with or without AZT,
  • Monotherapy causes resistance,
  • and there may be other factors that contribute to transmission.

Glaxo = Genocide

At what point is Glaxo going to take responsibility for their drug? Pregnant women continue to be instructed to take AZT alone, a strategy that treats the fetus first and the woman second. When will Glaxo stop sacrificing the lives of women in order to maximize their profits from out-dated, virus resistant, HIV therapies?

In the final analysis, as women living in this world, and as women facing AIDS, we really can't accept all scientific reports as gospel. Furthermore, we really have our work cut out for us, because, not only is there limited information about women, but the information that is out there is often fragmented and sometimes bogus.

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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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