Where This Story StartsThe Room Everyone Else Left
In the first years of the AIDS crisis, a lot of people walked out of rooms. Families walked out of hospital rooms when a son was diagnosed. Priests walked out of homes where a partner was dying. Nurses refused to enter certain wards. Funeral homes refused bodies. Dentists refused patients. Some hospitals put meal trays on the floor outside the door instead of carrying them in.[1]
Somebody walked in.
Very often — more often than the mainstream telling of this history has admitted — the person who walked in was a lesbian. Not because she had a personal stake in gay men's lives that other people didn't have. Because she had been organizing around bodies and stigma and health and grief already, and she recognized what she was seeing, and she was willing.
“Suddenly, the hospitals were full of lesbians who were volunteering. Volunteering to go into those rooms and help my friends who were dying.”
— A gay man remembering the AIDS wards, quoted in the i newspaper[2]This is the story of what those women did. It is also the story of a piece of HIV history that gets erased almost every time this history is told — and that we are not going to erase here.
San Diego · July 1983The Blood Sisters
In March 1983, the FDA banned “men who have sex with men” from donating blood. The reasoning was public-health caution — HIV had just been named the year before, there was no test for it, and the blood supply was already contaminated. The consequences were something else. About 60–70% of U.S. blood donors at the time were white, middle-class men, and a lot of them were gay. When they stopped donating — some by ban, some in protest — the country's blood supply cratered.[3]
Meanwhile, the people who most needed blood were often people with AIDS. The virus and the earliest, most brutal treatments left many patients severely anemic and dependent on repeated transfusions. So: the men who would have donated to save them were forbidden to donate, and the men who most needed the blood couldn't get it.[3]
In San Diego, the Women's Caucus of the San Diego Democratic Club had watched more than half of the club's male members die in the first two years of the epidemic.[4] A lesbian activist named Barbara Vick, who had been a regular blood donor herself, had a simple thought: we can donate. We are not banned. Let's donate for them.
Vick, along with Wendy Sue Biegeleisen and Nicolette Ibarra, worked out a directed-donation arrangement with the San Diego Blood Bank on Upas Street in Hillcrest. Donations would go into an account that people with AIDS could draw against. On July 16, 1983, they held the first drive. Vick expected about 50 women. Nearly 200 showed up. They gave 130 units of blood.[4] It was, as far as anyone can tell, the first blood drive of its kind anywhere in the country.[5]
The First Blood Sisters Drive
Nearly 200 lesbians queued around the block at the San Diego Blood Bank in Hillcrest. 130 units of blood went straight into a dedicated account for people living with AIDS.[4]
✓ Model replicated in Denver, Boston, LA, San Francisco, Baltimore, Memphis, and Washington within monthsThe Blood Sisters set four ground rules for themselves and everyone who copied them: use directed-donation accounts whenever possible so the blood reached queer patients; drive queer women to donate; welcome allies too; and publicize the drives loudly, especially through “straight” media.[5] One drive in San Francisco carried a poster that read simply: “Our Boys Need Our Blood.”[2]
The Blood Sisters continued to organize drives in San Diego for the next four years, and the model spread nationwide. In 1984, the National Gay Task Force gave the San Diego group its humanitarian award for what NGTF executive director Virginia Apuzzo called a “nearly two-year-old nationwide Blood Sisters campaign.”[1]
The uncomfortable footnote: The FDA's ban on blood donation from “men who have sex with men” that made the Blood Sisters necessary was not lifted until 2015, and only fully replaced with an individual risk-based screening approach in 2023. Barbara Vick's blood drive was a workaround for a policy that outlasted the crisis it was written for by four decades.[6]
Everywhere · 1981–1996In the Hospital Rooms
The Blood Sisters are the most photographable piece of this story, so they get remembered. The larger piece — the piece that happened on double-shifts and in living rooms and at bedsides for a decade and a half — is harder to photograph, and it has been harder to remember.
Lesbians became, quietly and en masse, the caregiving infrastructure the country refused to provide. They volunteered in hospitals when nurses wouldn't go into the rooms. They organized meal deliveries when families cut people off. They filed insurance paperwork and Social Security forms for men too sick to hold a pen. They sat at bedsides for the last hours. They planned the memorials. They cleaned out the apartments. They comforted the boyfriends whose relationships the law didn't recognize.[2]
“We had nothing medically to help people then, so what we dealt with was death on a regular basis.”
— Blood Sister, quoted by the Women's Museum of California[4]Some of this was formalized. Gay Men's Health Crisis (GMHC), founded in New York in January 1982, staffed its buddy program — volunteers who showed up week after week for the same person — disproportionately with lesbians.[7] The Shanti Project in San Francisco did the same. Hospice programs in cities that had them relied heavily on lesbian volunteers to enter homes and rooms other volunteers wouldn't.
Most of it was not formalized. It was one woman driving a friend to the hospital and staying for the weekend. It was a girlfriend of a girlfriend who happened to be an RN taking the night shift no one else would. It was a lesbian couple emptying a dead man's apartment so his parents didn't have to see the pill bottles or the leather jacket or the pictures. It happened over and over across the country. Almost none of it made the news.
ACT UP · 1987 onwardThe Women's Caucus
ACT UP was founded in New York in March 1987 after Larry Kramer's speech at the Lesbian and Gay Community Center.[8] From the very first meeting, there were lesbians in the room — and from the very first meeting, they were doing a specific and unglamorous kind of work.
Maxine Wolfe, a longtime feminist and reproductive-rights organizer who joined ACT UP in June 1987, later described how it went. Even though lesbians were the smaller group, they were the people who had done politics before. They ran the civil disobedience trainings. They were the marshals. They handled the logistics. “The men have always been the graphic artists,” Wolfe said, “and we do the xeroxing and typesetting.”[9]
By 1988, Wolfe was hosting “Dyke Dinners” — informal meals where lesbian ACT UP members compared notes on how the movement they were building was, over and over, failing to notice women. Especially women of color. Especially HIV-positive women. The men were dying loudly and being counted; the women were dying quietly and not being counted at all.[10]
They put two questions on the table — and refused to leave until both were answered.
The Women's Caucus formed inside ACT UP New York with two goals. First: force the CDC to change its definition of AIDS, which was so male-focused it made hundreds of thousands of women with HIV statistically invisible and therefore ineligible for benefits and care. Second: raise real awareness of HIV inside lesbian communities, where women were being told they were “low-risk” and were dying anyway.[10]
The caucus was a working group with a book (Women, AIDS, and Activism, 1990), a Shea Stadium action televised nationally, a lesbian safer-sex workshop, and a two-year federal fight ahead of it.[11]
January 1, 1993Getting Women Counted
Here is the CDC problem in plain terms. Until 1993, the U.S. government's official definition of AIDS was based on the opportunistic infections that mostly showed up in men — Kaposi's sarcoma, Pneumocystis pneumonia, and a handful of others. The infections that were killing women with HIV — recurrent bacterial pneumonia, invasive cervical cancer, pulmonary tuberculosis — were not on the list.[12]
Which meant, in practice: an HIV-positive woman dying of cervical cancer did not have “AIDS.” She could not qualify for Social Security disability. She could not qualify for Medicaid on that basis. She could not access the Ryan White CARE Act programs. She got sicker and poorer and often died before any of the paperwork was resolved.[13]
“They died before getting any benefits, because according to the CDC's definition, they did not have AIDS.”
— Maxine Wolfe, testimony to Congress on the CDC AIDS definition, 1991[13]Terry McGovern, a legal aid attorney in New York, sued the Social Security Administration on behalf of women whose disability claims had been denied. The ACT UP Women's Caucus put the CDC itself under siege — testimony, congressional pressure, ferocious press work, and public protests, some of them at CDC headquarters in Atlanta. The slogan Maxine Wolfe helped write: Women don't get AIDS. They just die from it.[10]
On January 1, 1993, after two years of that pressure, the CDC's revised AIDS definition took effect. It added invasive cervical cancer, pulmonary tuberculosis, recurrent bacterial pneumonia, and a CD4 count below 200 as AIDS-defining conditions.[12] Overnight, the caucus member Marion Banzhaf later said, the number of women counted as having AIDS in the U.S. went from about 10% to roughly 50% of the actual affected population.[10]
That is not a small footnote in HIV history. It is one of the largest single acts of public-health course correction in the American epidemic, and it was pushed across the finish line, in large part, by a room of lesbians who did the reading, ran the meetings, and refused to be told no.
GMHC · 1992–2005The Lesbian AIDS Project
For most of the 1980s, official public-health messaging told lesbians they were “low-risk” for HIV. This was, at best, sloppy. Lesbians who used injection drugs were at risk. Lesbians who had sex with men were at risk. Lesbians who did sex work were at risk. Trans lesbians, who were rarely spoken of at all, were at risk. Some cisgender lesbians were becoming HIV-positive through partner sex, and the community was not talking about how or how often.[14]
Amber Hollibaugh — a working-class, high-femme lesbian activist, writer, and former sex worker with roots in radical feminism — founded the Lesbian AIDS Project at GMHC in 1992. It was the first HIV-prevention and support program in the United States explicitly designed by and for lesbians, dyke-identified women, and queer women, including women who had sex with women and men both.[14]
The Project ran support groups, harm-reduction workshops, safer-sex education that actually named what lesbians do in bed, and services for HIV-positive lesbians who had been told for a decade that they didn't exist. It stayed at GMHC for more than a decade. Its very existence is a rebuttal to the story that AIDS was “a gay men's disease that lesbians helped with.” Lesbians helped with it because it was, in more ways than the epidemiology admitted, theirs too.
A Small Piece of LanguageWhy the L Comes First
Some short version of this history is often summarized in a single sentence: the “L” comes first in LGBT because lesbians showed up during AIDS. That's not literally where the acronym came from — the reordering happened in different places at different times, and there was no single deciding meeting. But the story has stuck for a reason. Enough people remember what actually happened. Enough people in the acronym-making rooms wanted it acknowledged.[2]
Put more plainly: a lot of gay men were kept alive, kept comforted, and buried with dignity because lesbians did the work. And a lot of women with HIV finally got counted because lesbians did that work too.
To be very clear about who this history is honoring: not every lesbian caregiver was a stranger doing charity. Many were partners, ex-partners, best friends, siblings, coworkers, roommates, chosen family. Many were themselves losing partners and friends. Some were losing five friends, ten friends, more. The women who did this work in the 1980s and 1990s are, in every sense that matters, long-term survivors of the AIDS crisis — and most have never been named that way.
NowStill Here, Still Doing the Work
The Blood Sisters dissolved in 1993. ACT UP Women's Caucus members went in a dozen different directions — some into research advocacy, some into policy, some into the Lesbian Avengers, some into direct services. The Lesbian AIDS Project ran into the 2000s and closed. The women themselves aged, and some of them died, and some of them are still doing the work.
Amber Hollibaugh went on to found Queers for Economic Justice and to write books that changed the shape of queer working-class politics. Maxine Wolfe co-founded the Lesbian Avengers and the NYC Dyke March and, as of this writing, is still a coordinator at the Lesbian Herstory Archives. Sarah Schulman, who was in ACT UP alongside them, co-created the ACT UP Oral History Project in 2001 — 188 interviews with surviving members, freely available — because she was watching the story get told wrong in real time and she refused to let that stand.[15]
“Women came out of the woodwork — women that didn't want to have anything to do with men, even gay men. It was an incredible experience to see the caring and support.”
— Peggy Heathers, a Blood Sister, remembering the first drive[5]Every U=U conversation, every PrEP prescription, every Ryan White CARE Act grant that reaches a woman living with HIV in Florida, every hospice social worker who knows how to be in the room with a dying queer person — some part of that infrastructure exists because of the women in this article. We say their names because if we don't, the history gets written as if they weren't there.
They were there. They are still here. This one is for them.
If you want to hear from them directly: the ACT UP Oral History Project (actuporalhistory.org) has full transcripts and video interviews with Maxine Wolfe, Marion Banzhaf, Amber Hollibaugh, and dozens of other lesbian ACT UP members. Sarah Schulman's Let the Record Show: A Political History of ACT UP New York, 1987–1993 (2021) is the definitive book. The Lesbian Herstory Archives in Brooklyn (lesbianherstoryarchives.org) holds original materials, including the Women's Caucus papers.
“We were there. We are still here.”
Every time this history gets told without the women in it, we lose a piece of the truth of how a generation was kept alive. This site is a small correction. If you have a story, a name, or a photograph that belongs in this history, we would like to hear from you.
— RiseUpToHIV
References & Sources
- Lambda Archives of San Diego, “Digitization” project page and “Barbara Vick Interview” (February 11, 2016) — documents the Blood Sisters' 1983 founding by the Women’s Caucus of the San Diego Democratic Club, the first drive on July 16, 1983 at the San Diego Blood Bank in Hillcrest (nearly 200 women, ~130 donations), and continued organizing for the next four years. Los Angeles Times (January 9, 1985) — National Gay Task Force executive director Virginia Apuzzo confirms the 1984 NGTF humanitarian award and the “nearly two-year-old nationwide Blood Sisters campaign.” lambdaarchives.org — Digitization · lambdaarchives.org — Barbara Vick interview · latimes.com — Fear of AIDS Leads Red Cross to Cancel Lesbian Blood Drive ↩
- Josh Barrie. “The lesbian ‘blood sisters’ who cared for gay men when doctors were too scared to.” i newspaper, August 21, 2020. inews.co.uk/opinion/comment/the-lesbian-blood-sisters-who-helped-save-gay-mens-lives-235100. Oral-history quotes from gay men who lived through it, including the “Our Boys Need Our Blood” SF poster. ↩
- Yesterqueers. “San Diego's Blood Sisters.” yesterqueers.com/videos/blood-sisters. Background on the 1983 FDA blood ban, the 60–70% donor-supply collapse, and the anemia burden on HIV patients. ↩
- Women's Museum of California. “The Blood Sisters of San Diego.” womensmuseumca.org/the-blood-sisters-of-san-diego. Founders (Wendy Sue Biegeleisen, Nicolette Ibarra, Barbara Vick), the July 16, 1983 first drive, and Blood Sister oral history. ↩
- DIVA Magazine. “The Blood Sisters: the unsung heroes of the AIDS crisis.” February 8, 2024. diva-magazine.com/2024/02/08/the-blood-sisters. First-drive turnout, replication across the U.S., and the four Blood Sister principles. ↩
- U.S. Food and Drug Administration. “Revised Recommendations for Reducing the Risk of HIV Transmission by Blood and Blood Products.” May 11, 2023. fda.gov/news-events/press-announcements/fda-finalizes-move-recommend-individual-risk-assessment-determine-eligibility-blood-donations. Final rule replacing categorical MSM deferral with individual risk assessment, April 27, 2023. ↩
- GMHC, “History” — documents GMHC's founding in 1982 and the creation of the Buddy Program the same year. New York Public Library, Gay Men's Health Crisis Records (collection 1126) finding aid — documents that GMHC created the Buddy Program in September 1982, initially with 20 volunteers on call 24 hours a day, and that “as alarm spread about the disease and hospital staff refused to care for PWAs, Buddies also began to provide nursing care.” gmhc.org — History · nypl.org — GMHC Records finding aid (PDF) ↩
- NYC LGBT Historic Sites Project. “ACT UP Demonstration at the New York Stock Exchange.” nyclgbtsites.org/site/act-up-demonstration-at-the-new-york-stock-exchange. Documents Larry Kramer's March 10, 1987 speech at the Lesbian and Gay Community Center and the founding of ACT UP two weeks later. ↩
- Maxine Wolfe. “The Tactics of Early ACT UP.” ACT UP New York oral history. actupny.org/documents/earlytactics.html. Wolfe on the division of labor in early ACT UP and lesbians' role in trainings, marshaling, and logistics. ↩
- Yale University Library. “Why are women invisible in the AIDS pandemic?” We Are Everywhere exhibition. onlineexhibits.library.yale.edu/s/we-are-everywhere/page/why-are-women-invisible-in-the-aids-pandemic. Maxine Wolfe's Dyke Dinners, ACT UP Women's Caucus founding, 1991 congressional testimony, and the 10%→50% shift after the 1993 CDC definition change (Marion Banzhaf). ↩ ↩
- ACT UP/NY Women & AIDS Book Group. Women, AIDS, and Activism. South End Press, 1990. Bibliography at academicworks.cuny.edu/gc_pubs/94. Original members included Jamie Bauer, Heidi Dorow, Maria Maggenti, Ellen Neipris, Ann Northrop, Sydney Pokorney, Karen Ramspacher, Maxine Wolfe, and Brian Zabcik. ↩
- Centers for Disease Control and Prevention. “1993 Revised Classification System for HIV Infection and Expanded Surveillance Case Definition for AIDS Among Adolescents and Adults.” MMWR, December 18, 1992. cdc.gov/mmwr/preview/mmwrhtml/00018871.htm. The revised AIDS definition took effect January 1, 1993 and added invasive cervical cancer, pulmonary tuberculosis, recurrent bacterial pneumonia, and a CD4 count below 200. ↩ ↩
- Philip J. Hilts. “AIDS Definition Excludes Women, Congress Is Told.” The New York Times, May 11, 1991. nytimes.com/1991/05/11/us/aids-definition-excludes-women-congress-is-told. Coverage of Maxine Wolfe and Terry McGovern's 1991 congressional testimony on how the CDC definition excluded women. ↩
- Indyweek. “A Missing History: Amber Hollibaugh.” February 7, 2001. indyweek.com/culture/art/missing-history. Founding of the Lesbian AIDS Project at GMHC in the early 1990s, with Hollibaugh as founding director. ↩
- Sarah Schulman. Let the Record Show: A Political History of ACT UP New York, 1987–1993. Farrar, Straus and Giroux, 2021. Companion oral-history archive at actuporalhistory.org. Schulman on Wolfe: “the two names that emerge most often in reference to internal leadership are clearly Maxine Wolfe and Mark Harrington.” ↩