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

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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.


In 1981 the first case of Gay-Related Immune Deficiency (GRID), which would later be referred to as AIDS, was reported. Though mostly affecting gay males, five women were diagnosed with GRID in 1981.

Sandra Ford, a drug technician for the U.S. Centers for Disease Control and Prevention (CDC), first reported the beginnings of the AIDS epidemic. Ford wrote a memo about two phone calls -- the first documentation of the epidemic that would come to be known as AIDS -- and alerted CDC doctors to the similarities between the unusual cases. "It wasn't a big light bulb experience," she recalled to People Magazine in 2004; "But I did rememeber the first doctor mentioning the homosexuality of the patient." Her office soon became the center of the evolving HIV/AIDS epidemic. "They called me the mother of AIDS," she said. "I was around at the beginning. And I would love to be around when the epidemic comes to an end." A paper napkin was later taped to Sandra's door stating: "In this office in April 1981, Sandra Ford discovered the epidemic that would later be known as Acquired Immune Deficiency Syndrome."


By 1982, women diagnosed with HIV are classified under the risk category of "prostitutes," even though woman are gaining more visibility in the HIV/AIDS community.

Mary Richards Johnstone, a wealthy woman from the affluent suburb of Belvedere, Calif., receives 20 units of blood from Irwin Memorial Blood Bank in San Francisco during heart surgery, and is later diagnosed with AIDS. She was later portrayed by Swoosie Kurtz in the TV movie And the Band Played On.


Women living with HIV/AIDS began to get more newspaper coverage. Liz Smith, a well-known gossip columnist -- who went on to raise more than $20 million for various HIV/AIDS charities -- is the first popular national columnist to write about AIDS. Barbara Fabian Baird (pictured), of the National Institutes of Health (NIH), becomes one of the first nurses to conduct AIDS research. Also, CDC adds female sexual partners of men with AIDS as a "risk group."


Caitlin Ryan, a social worker, becomes the first executive director of AID Atlanta. AID Atlanta is the oldest AIDS Service Organization (ASO) in the Southeast.

That year, Margaret Heckler is the Secretary of the Department of Health and Human Services. At a press conference, she announced that Dr. Robert Gallo has found the cause of AIDS. She also announces the development of a diagnostic blood test to identify the virus and suggests that a vaccine against AIDS could be produced in two years.

"There will be a vaccine in a few years and a cure for AIDS before 1990." -- Margaret Heckler


Hollywood began to take notice of AIDS in 1985. Actress Elizabeth Taylor, along with Dr. Mathilde Krim, co-found amfAR (the American Foundation for AIDS Research). Elizabeth Taylor hosts the first Hollywood AIDS fundraiser. Singers Bette Midler and Barbara Streisand appear in a sold out fundraiser for the San Francisco AIDS Foundation, which released its first brochure about women and AIDS that year.

Though not of the Hollywood ilk, Mother Theresa visited AIDS patients at George Washington University after receiving a Medal of Freedom from President Ronald Reagan.


By 1986, women represented 7 percent of U.S. AIDS cases. As such, more and more women were taking on leadership roles in the fight against HIV. Marie St. Cyr, a Haitian-born social worker, becomes the first director of the New-York based Women and AIDS Resource Network (WARN) after it is formed by several women living with and affected by HIV.

Caitlin Ryan was hired to co-author the first book on AIDS policy, AIDS: A Public Health Challenge. This book was distributed to all members of Congress, governors, mayors and key public officials, and served as the basis for many of the recommendations of the first Presidential Commission on AIDS.


With the founding of ACT UP in 1987, AIDS activism really begins to take shape, which is good, as only 13.5 percent of NIH money is dedicated to women's health issues at this point. And, women are still being excluded from HIV trials unless they are on the birth control pill or IUD; no childcare, transportation, or gynecological care is available as part of these trials. Trial inclusion/ exclusion criteria read: "No pregnant women and no non-pregnant women" allowed. U.S. Surgeon General C. Everett Koop urges any woman considering pregnancy to be tested for HIV.

Princess Diana opened the first AIDS specialist hospital ward in England. That she did not wear gloves when shaking hands with people with AIDS was widely reported in the press and helped change attitudes towards people with AIDS. Madonna threw her first AIDS benefit concert and recorded the song "In This Life," about friends who had died from the disease.


1988 is a year of important strides and misguided missteps for women. While revised NIH guidelines suggest "by gender" analysis of data being collected in clinical trials, clear standards for women's inclusion in the trials are not established. A Cosmopolitan magazine article written by a psychiatrist tells women that they can have unprotected vaginal intercourse with an HIV-positive man if they have "healthy vaginas." The article also said that most heterosexuals were not at risk for HIV and that it is impossible to transmit HIV using the "missionary position." Meanwhile, amid the misinformation, women are named the fastest growing population with HIV.

Elizabeth Glaser, Susan DeLaurentis and Susan Zeeger co-found the Pediatric AIDS Foundation after learning that Elizabeth, her daughter Ariel and her son Jake are living with HIV.


Bruce Lambert writes an article about Alison L. Gertz for the New York Times. A 22-year old New Yorker when diagnosed, Gertz had gotten sick and was never tested for HIV by doctors, who thought a young female non-drug-user could not be at risk. She later learned she had gotten it from a good friend who she had slept with once. Later, a movie starring Molly Ringwald was made about Alison's life.

Two important local organizations were formed in 1989: SisterLove, Inc., is founded by Dazon Dixon Diallo and is the first and oldest organization in Georgia to focus on the needs of women living with and at risk for HIV. BABES is founded by HIV-positive women in Seattle under the philosophy that HIV-positive women are uniquely qualified to understand and encourage one another.