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It's Not Enough
We Want and Need More!

Spring 1997

IT'S IMPORTANT to know some history of women in the AIDS epidemic, in order to be prepared for what is ahead. Ours is a history in which lesbians, heterosexual women, and gay men, infected and uninfected, from diverse cultural and economic circumstances and life experiences have worked together. So, it contradicts the myths that say we can't work together and the rumors which say we haven't.

It is not about numbers or statistics. It is a history about real people, some of whom fought for women's lives and some who don't. It is a history that won't be found in government press releases.

My history of women and AIDS is one of criminal neglect by a government and its agencies, including those in charge of public health and treatment research. It is a history of unscientific and unethical research, of white male science, and of indifference to women.

It is also a history of racism, sexism, classism, homophobia, addicto-phobia, and paternalism. A history in which researchers, medical practitioners and government representatives feel perfectly OK calling the women in their research studies "the moms". And these same people continue to act publicly as if the fact that a woman is HIV-infected, poor, a woman of color, a drug user, an ex-inmate, or a lesbian means that we are too stupid to understand the world or the choices we have to make. Instead "they" want us to let them make decisions for us. This is a history about women coming together, despite all odds and with limited resources, sharing information across continents to lead a fight for what we need. It is about what we have gained & what we still have to do.

In the past few years it has become ordinary to hear people say "the AIDS epidemic is NOW spreading into previously unaffected communities". This phrase usually means women. It would be more accurate to say that some people have FINALLY been forced to admit what they knew all along.

If you don't look for something, you won't find it. The history of women and AIDS has been one of people not looking at what they knew was there. The history of activism has mostly been about forcing them to look.

In 1982, an article published in the Annals of Internal Medicine reported on opportunistic infections in 5 previously healthy women, all of whom had been diagnosed in 1981. One woman had symptoms for 35 months before she got one of the opportunistic infections that the Centers for Disease Control had identified with the illness that eventually got called AIDS; infections that they had found in gay white males. It was reported that one woman had swollen lymph nodes in her cervix and another had bacterial pneumonia. Symptoms it would take another 10 years for the government to admit were associated with AIDS.

At Multiple Risk

In 1987 when I became a member of ACT UP, I knew I was politically at-risk because of the homophobia in the world. But I did not know I was physically at risk, even though I had two lovers; one a man, the other a woman; both whom had been IV drug users! As it turned out, I was not infected but that experience brought the issue home to me in a way I have never forgotten.

How was it that in Spring 1988, Cosmopolitan Magazine could print an article they claimed was "well researched," written by a psychiatrist, who told women that we could have unprotected vaginal intercourse with an HIV positive man and would not get infected if we had healthy vaginas? How was it that for years women coming into Emergency Rooms with symptoms of pneumonia were given aspirins and told to go home?

Why was it that researchers applying for grants to study HIV in women could not get their projects funded? And to this day, cannot get funding for any meaningful research done above the waistlines of women? How was it that lesbians were told they could not get AIDS? Community women trying to set up hotlines and support groups could not get anyone to support them!

It was not because there were not any cases, it was that for many years the CDC, National Institutes of Health, and every other government agency, as well as the medical research establishment and the media chose to make us invisible. Even though we are far more likely to be infected by others than to infect them, when they do make us visible, we're treated as "vectors of transmission" to men & fetuses. Women as women are not treated as people in need of health care and services.

The First Conference

It was 10 years into the epidemic, before the government sponsored a conference on Women with AIDS. Even getting a conference was a battle! At one of the planning sessions, a woman from a federal agency asked another: "How come there is finally going to be a conference about women and AIDS when we've been trying for three years to pressure for it from the inside and no one has listened?" The second woman replied: "Because 25 people got arrested for sitting-in at the offices of Dan Hoth, Director of the Division of AIDS, and he got scared to death."

Although some male activists had been regularly meeting with researchers, after 5 months of phone calls, women AIDS activists could not get a meeting. In addition to that sit-in, and constant phone calls, we had to send threatening letters and stage a demonstration against Dan Hoth in front of 5,000 of his colleagues. We reminded him that we were prepared to sit-in again. He finally agreed to a meeting. At that meeting one of our demands was for a women's conference.

At that conference, in December 1990, Dr. Tony Fauci, head of the National Institutes of Allergy and Infectious Diseases, was given the opportunity to address the 1500 attendees at the plenary session. Since neither he nor his agency had done any research about women and AIDS, he was using his time to give us an AIDS 101 lecture, telling us how the virus worked.

Women Speak Out

Tamar Sokel, from Women Fighting AIDS, felt compelled to interrupt him. She stepped up to the microphone and told him that the only degree she had was in "street-ology" but she, and every other infected woman she knew, knew how the virus worked.

During another plenary session in which Dan Hoth actually admitted he had nothing to say about women and AZT and then told us what he knew about men instead, 25 women identified themselves as women with HIV and demanded that the CDC change the definition of AIDS to include the infections women with HIV get; that the disability regulations be changed so that women could get disability based on the infections they got; and that women get access to research studies for potentially life saving treatments.

Women demonstrated against Dr. James Curan of the CDC, who was still insisting that the definition of AIDS couldn't be changed to include infections women get because there wasn't enough evidence. One woman after another interrupted him to give him evidence. They told about their infections: cervical cancer, bacterial pneumonia, pelvic inflammatory disease, yeast infections and tuberculosis.

The Double Standard

Only one month earlier, women AIDS activists had met with, who was then, the head of HIV at the CDC, Dr. Gary Noble, and with epidemiologists on his staff. We had given them lots of data. It was clear to us that their position did not stem from ignorance. ALL they could say was that changing the definition would upset their statistics, make Congress suspect their motives & make middle class white women with yeast infections nervous. The double standard was apparent.

The previous definition of AIDS in gay men had not been based on rigorous , controlled, scientific research. That definition was based on reports from clinicians. Yet the CDC said that 33 studies showing a relationship between immune suppression and cervical cancer weren't enough.

Katrina Haslip was at that meeting. Katrina had been a central figure in the AIDS Counseling & Education (ACE) Project when she was in prison. She founded ACE Out, for women coming out of prison. She said, in response to their statements: " I hold you personally responsible for the deaths of every woman from HIV, including myself."

And, Katrina did die without an AIDS diagnosis, although she'd had multiple bouts of bacterial pneumonia and lots of other types of infections. But she lived long enough to see the CDC definition changed.

Getting to that point took two more years of intense activism. The Campaign included every strategy and tactic there is, beginning with a demonstration in Atlanta at the CDC headquarters in Spring 1990. A second large demonstration was held there in December. At that protest many women with HIV marched for miles and held a public speak out despite the most torrential downpour I have ever seen.

Local demonstrations about changing the definition took place throughout the nation. There was an ACT UP petition and postcard campaign, and petitions were started by grass-root groups all over the country.

Despite all of this, the Centers for Disease Control tried, twice, to release a new definition which would not include women's or drug users' infections. Each time, we wrote critiques and mailed them out urging people to send in public comment, which was required before a change could take place. The CDC received more letters of public comment about their idea of a definition, than they had ever received for any other issue. It didn't matter.

Our next step was to ask people to send letters to their senators and representatives demanding a public investigation of the CDC. Confrontations with James Curan and Gary Noble took place all over the country as well as at the International Conference held in Amsterdam in 1992, where AIDS activists from the US were joined by women from all over the world since the World Health Organization's definition of AIDS was based on the CDC's.

The campaign also included sending out media packets. The result was hundreds of newspaper articles in which women's symptoms were described, for the first time in the public media. There was also a full page ad in the New York Times which had the headline; "Women Don't Get AIDS. They just Die From It" and it was signed by over 300 grass-roots groups.

Coming out of all of this, we pulled together a coalition of women from different groups and the CDC was finally forced to hold a public hearing in the Fall of 1992.

Then we also had to force them to invite the doctors and researchers who were seeing women and had the information because of course, they only wanted CDC researchers to speak, who we knew would give the government line again. We had to independently raise $20,000 so that infected women who couldn't afford it could attend, (something the government wouldn't do).

We also got the media to come. At the end of that hearing, after what was now almost 4 years of work, and even though they had no more information than before, Dr. Curan had to finally admit that he should add three clinical conditions to the CDC definition of AIDS: bacterial pneumonia's, TB and stage III cervical cancer. Recurrent vaginal candidiasis was also added as a symptom of HIV.

Katrina was in the hospital near death when she heard that the CDC was going to change the definition. She died only a short time later. Yet, when a reporter asked how she felt about the fact that "the government had changed the definition of AIDS", she answered: "The government didn't change the definition of AIDS. WE DID. And it's not enough! We want and need more."

And we do. So now the world, some of it, will admit that women with AIDS exist. And, we had hoped that by now they might tell us what our disease looks like. And we need treatment recommendations and a cure.

I want to leave you with two thoughts. First: NOTHING - nothing which exists for women with HIVAIDS has been given to us. Of the little that does exist; and it is pitifully little, and it can be taken away in a minute; all of it has had to be fought for tooth and nail. That we have had to fight, so hard, for so little is because there are people who don't care if we survive and others who don't want us to survive. That's why AIDS is a political crisis and not just a medical crisis.

The second is that history is not given to us. We make it. And, if, there is to be a continuing history of women and AIDS that is about getting what we need and want instead of one about rising case-loads and deaths, there need to be more women willing to fight to make it happen - to be loud and rude and in people's faces in ways that are neither ladylike nor polite.

We must demand what we know we need instead of being grateful for what they want to give us. And, this activism needs to be backed up by the hard work it takes to know the issues! Because when we force them to let us sit at the table we have to know what to demand and how to argue for it or else they will just use us as tokens.

The activism also has to be backed up by a commitment to those who are not at the table that we will be accountable to them, listen to them, disseminate information to them; that we will fight for room at the table for as many women as we can and that we will be willing to refuse to be at the table if that is what is necessary.

Finally, our activism must be backed up by remembering that anything we get will not be because we are smart and work hard -- which we are and we do -- it will be because we are smart and work hard AND are willing to be loud and rude and in people's faces in ways that are neither ladylike nor polite.


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