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A Timeline of Women Living With HIV: Turning Up the Volume on Women's Voices in the 1990s

By Terri Wilder

April 9, 2013

A Timeline of Women Living With HIV: A Small but Growing Chorus in the 1980s

Since the beginning of time, women have had to fight for recognition. Women had to fight to vote. Women had to fight to work. Women even had to fight to wear the clothes they liked.

Thirty-one years ago women were fighting off unusual symptoms. Thirty-one years ago women were fighting to be diagnosed. Thirty-one years ago women were fighting to stay alive.

However, the fight is not over and is perhaps just beginning. Women, both affected and infected, must gather their strength and remember those who have gone before them. We must never go back to 1981. We must run our lives as if we are the female CEO of our own company. We must meet with our "Board of Directors" for input. We must set a strategic plan for "Women AIDS, Inc." We must be the most important person in our life!

We invite you to read this humble history of women and HIV and decide what you can do to add to the history of HIV and women.

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Cook County Hospital


The year 1990 held a lot of watershed moments for women living with HIV. The estimated number of women worldwide living with HIV is at 3 million. The First National Women and HIV Conference is held, and women with HIV lead an ACT UP protest at the CDC (U.S. Centers for Disease Control and Prevention) to expand the definitions of AIDS to include women-specific diseases. Ninety-four women were arrested at that demonstration.

In Chicago, Cook County Hospital (the only hospital with an AIDS ward in Chicago) refuses to admit women, stating they don't have a women's AIDS ward. Gay and lesbian activists set up a ward in the street in front of the hospital. While 35 activists are arrested, two days later, the hospital admitted women with AIDS for the first time.

Rebecca Denison


That year saw the opening of many prominent women's organizations and one rife legal battle. Kimberly Bergalis, claiming she was infected with HIV by her dentist, requests that Congress mandate testing of all health care workers, and writes the American Medical Association asking for the same. However, she dies by the year's end.

WORLD (Women Organized to Respond to Life-Threatening Diseases), an AIDS organization in Oakland supporting women with HIV, publishes their first newsletter by and about women living with HIV. WORLD was founded by prominent activist Rebecca Denison (pictured). Women Alive is founded in Los Angeles by and for women living with HIV. Mother's Voices is founded by Suzanne Benzer and four other mothers, each of whom lost a child to AIDS.

Mary Fisher


Mary Fisher addressed the Republican National Convention as a person living with AIDS, and stated, "I don't know what kind of reception my speech received. It was like an out-of-body experience. People told me afterwards that the room got completely silent while I spoke, which is unheard of at a convention. Afterwards, President Bush said I'd done a wonderful thing." Dan Shaw of the New York Times described the speech as "one of the best American speeches of the 20th century." That same year, Elizabeth Glaser gives a speech at the U.S. Democratic National Convention as a person living with AIDS.

The CDC also expanded the definition of AIDS to include: bacterial pneumonia, tuberculosis and stage 3 cervical cancer. Recurrent vaginal candidiasis (yeast infections) was also added as a symptom of HIV. This was a victory for women living with HIV.

Iris De La Cruz


In 1993, the "female condom" is approved, allowing women a tool for taking control of their own HIV prevention and sexual health. Kristin Gebbie is appointed the first director of the Office of National AIDS Policy. In response to a protest by ACT UP's Lesbian Caucus, Department of Health and Human Services Secretary Donna Shalala forms a Lesbian AIDS Task Force.

"In March of 1993, Iris House, a center for Latina and African-American women diagnosed with AIDS, opens its door in East Harlem, N.Y. This program came to fruition through nearly a decade of work by the Women and AIDS Working Group, and was named for Latina HIV activist Iris De La Cruz, who did not live to see the doors of Iris House open to the women she was fighting to help. Iris House began working with a staff of three, providing transitional services for women who were afraid of what would happen to their children and families when they died.

pregnant woman


Though Elizabeth Glaser, one of the most high-profile faces of people living with HIV, died this year, many others were given a chance at life. The U.S. Public Health Service recommends that HIV-positive pregnant women use AZT to reduce mother-to-child transmission after the ACTG 076 study finds that pregnant women taking AZT reduce the risk of transmission to their unborn child by two-thirds.

Rae Lewis-Thornton, an African-American woman living with HIV and now a prominent blogger, was featured on the cover of Essence magazine. Former U.S. Surgeon General Joycelyn Elders is fired by President Clinton for saying that masturbation should "perhaps be taught" as part of sex education.

Patricia Nalls


The year 1995 saw HIV make headlines on both sides of the American political aisle. Elizabeth Dole, president of the American Red Cross, halted publication of a highly anticipated HIV/AIDS training manual for the 1,600 Red Cross chapters nationwide when her "special team" of advisors from outside organizations convinced her that its contents were too explicit and controversial. President Bill Clinton appoints Dr. Alexandra M. Levin to the Presidential Advisory Council on HIV/AIDS. Dr. Levin's research included HIV-associated lymphoma, women and HIV, and the development and testing of a therapeutic AIDS vaccine.

Meanwhile, in another part of Washington, D.C., a support group called the "Coffee House" -- which Patricia Nalls formed with a few other women living with HIV -- officially became known as The Women's Collective (TWC). TWC was a nonprofit organization with the goal to support women and their families and to realize a vision of creating a full-fledged, woman-focused organization. The seed for the organization had been planted in 1990 when Patricia set up a private phone line in her home for women living with HIV to share their struggles and concerns. The phone line, which she advertised through flyers in her doctor's office, gave her and the women she spoke to strength and hope in knowing that other women in their community were in similar situations, dealing with similar worries.

Sophie and Sarah Denison


Due to the success of antiretroviral therapies, the annual incidence of women diagnosed with AIDS began to decline in 1996. Rebecca Denison (founder of WORLD) delivered twin girls, becoming one of the first HIV-positive women to talk publicly about her decision to become pregnant. Her girls, Sophie and Sarah, have grown up to be activists, as well.

Mother Theresa


By 1997, women accounted for more than half of HIV cases worldwide, and 75 percent of the cases among women were in women of color. The National Conference on Women and HIV took place in Pasadena, Calif., and chants of "Do Research To Save Women's Lives" echo the conference halls. The Los Angeles Times publishes an article about the conference.

Mother Theresa started an AIDS ministry in the United States. Her religious order, the Missionaries of Charity, went on to run at least five hospices for people living with AIDS.



By 1998, in the U.S., a cumulative total of 109,311 adolescent or adult females had been diagnosed with AIDS. African-American women were three times more likely to die from AIDS than Caucasian or Hispanic women. In South Africa, Gugu Diamini, an AIDS activist, was beaten to death by her neighbors after revealing her HIV status on Zulu television.

The Global Campaign for Microbicides is founded at the XII International AIDS Conference in Geneva. The creation of the microbicide campaign came about from key members of the women's health and HIV community deciding to work together to focus world attention on the critical needs for new HIV prevention options, especially for women.

Hands With Ribbons


The decade ended on a lot of discordant notes. Mary Fisher announced she was stopping combination therapy due to the side effects. The National Conference on Women and HIV is held in Los Angeles, Calif., with over 1,000 women in attendance. This event is documented as the largest gathering of HIV-positive women in history. Worldwide, over 1 million women died of AIDS in 1999, the highest number so far in a single year.

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