Mary Lucey and Nancy MacNeil were dedicated activists fighting for the rights and fair treatment of women with HIV and AIDS. They were most active within AIDS Coalition to Unleash Power, Los Angeles (ACT UP/LA) and were two of the founders of Women Alive Coalition, an organization offering support and services for women with AIDS. The two met in the 1990s through ACT UP and were eventually married.

Mary Lucey was born December 15, 1958. In 1989 Mary was diagnosed with HIV, while pregnant and battling an addiction to drugs. After she was diagnosed, she felt alone and doomed to die. In her own words, “Soon I was introduced to AIDS-phobia. Doctors didn't want to deliver my baby. Nurses didn't want to touch me. One nurse yelled that AIDS was God's punishment and that my baby and I deserved to die. I didn’t know anybody else with HIV.” She was prescribed AZT, one of the only AIDS treatment drugs at that time, and given no counseling on the syndrome or mental health support.

She had decided to give her baby up for adoption and was contacted by Morning Glory House in Santa Rosa, California. Morning Glory also ran an organization called Starcross, that would adopt the baby. At Starcross Mary was taken care of until it was time to give birth to her daughter, Holly Marie. They counseled her about HIV and AIDS, and she had access to very good medical care. In 1990 she decided to move to Los Angeles. After encountering continuous difficulty finding access to medical care in LA, being offered support groups rather than medical care, she was finally put in touch with Vanessa Parker who referred her to a doctor who would treat women with HIV in Long Beach. In the same year Mary joined the AIDS Coalition to Unleash Power (ACT UP/LA) Women’s Caucus to help fight for women who found themselves like her, alone, HIV positive, and without access to medical care. ACT UP/LA became her family and friends when acting up, fighting back, and fighting AIDS.

Mary was tireless in fighting for women with HIV and AIDS, especially women in prison who had no access to medical care, safe sex and HIV/AIDS education, or proper food. Mary herself served 18 months in Frontera Women’s prison 1988-89. Her work fighting for women with HIV in prison with ACT/UP LA’s Women Caucus led to the compassionate release of Judy Cagle who was given the dignity to die at home. She fought to expand the Centers for Disease Control’s (CDC) definition of HIV/AIDS to include symptoms and manifestations of AIDS in women and intravenous drug users, which would lead to more accurate recognition of these groups in healthcare surveillance of the syndrome. Mary also fought for women to be represented in clinical trials for HIV and AIDS treatment and preventative drugs.

She devoted her personal and professional work to develop, implement, and fund healthcare services and public policy for people with HIV/AIDS, mental health programs, addiction and substance abuse, and persons with disabilities at city, state, and federal levels. Mary often testified and spoke in front of congressional leaders and state senators, as well as the CDC, the National Commission on AIDS, the National Institutes of Health (NIH), and Health and Human Services (HHS). She was a board member of the Women's Caucus of the AIDS Regional Board, on the UCLA Pediatrics Community Advisory Board, part of the Women's Interactive HIV Study Community Advisory Board, a member of the Friends Research Institute’s West Coast Institutional Review Board, where she assessed protocol and informed consent for research involving human subjects. Mary worked most closely with PROTOTYPES health center, Women Alive, and ACT UP/LA Women’s Caucus.

She married her partner of 30 years, Nancy MacNeil, an LA activist who fought in ACT UP/LA alongside Mary. The two lived in Venice, CA, before moving north of Los Angeles to Oceano, CA. Mary won a position on the Oceano Community Services Board and served for two consecutive terms from 2012 to 2016.

Nancy MacNeil was born December 11, 1950. MacNeil was born and raised in the Highland Park neighborhood of Los Angeles, CA. During high school she organized sit-ins and walk-outs protesting the Vietnam War and the draft; she fought against police brutality, allying with the Black Panther Party and helping with their breakfast programs in Downtown LA. She attended the Institute of the Study of Non-violence in Palo Alto, to study the means and ways towards radical social change, while continuing to fight back against the War, racial injustice, and police violence. MacNeil herself would bear scars from police violence, attacks from violent men, and arrests, throughout her life as an activist.

In the 1970s and 1980s MacNeil became more involved in the Gay and Lesbian Liberation Movement, joining the Lavender Left, and organizing for civil rights, queer liberation, and national healthcare for all. By the 1990s, MacNeil’s friends were dying of what medical professionals referred to as Gay-Related Immune Deficiency (GRID) and would later be called Acquired Immunodeficiency Syndrome (AIDS), causing her to join ACT UP.

It was in ACT UP, after attending the Women’s Caucus meeting, that she met Mary Lucey. In ACT UP/LA Women’s Caucus she acted as a fact finder and was part of the treatment and data committee, most notably writing HIV, IDU’s, and YOU: a report on the Patient Care Committee of the ACTG. She was also a part of the Prisoners with AIDS subcommittee and the ACT UP National Network with Lucey, MacNeil attended the AIDS Clinical Trials Group in Washington D.C. to advocate for the inclusion of women in AIDS treatment research, and an expansion to the criteria for diagnosing AIDS in women. Direct actions, marches, protests, mailing campaigns, and phone zaps were common ways that ACT UP/LA fought for rights for people with AIDS, and put pressure on the government and medical professionals for public health policy and a cure. Supporting people with AIDS through education, treatment, solidarity, and other social services were also important parts of AIDS activism. MacNeil was specifically focused on supporting and fighting for women who are HIV+ and women with AIDS, who were left out of early definitions of the disease and treatment research.

In 1993, MacNeil co-founded and was the executive director of Women Alive Coalition, a national non-profit organization directly supporting and empowering HIV+ women and women with AIDS through health services and programming, the establishment of a 24-hour national hotline, and a newsletter written in both Spanish and English. Women Alive grew out of another organization, Being Alive, which was run by friend and AIDS activist Ferd Eggan. He supported Lucey and MacNeil in the foundation of Women Alive after serving as executive director of Being Alive in the 1990s.

Both Mary and Nancy died within hours of each other on Saturday, February 11th, 2023. The two are survived by their two daughters, Holly and Mellissa.

Sources: Trent Straube, “Memory = History = Knowledge = Power,” POZ, February 14, 2022, https://www.poz.com/article/memory-history-knowledge-power

“ABOUT US/Nancy MacNeil,” ACT UP LA, accessed October 23, 2023, https://www.actupla.org/about-us

Nancy, MacNeil, “HIV, IDU’s, and YOU: a report on the Patient Care Committee of the ACTG”, n.d., box 2, folder 12, June L. Mazer Lesbian Archive, Los Angeles, CA.

1990

Co-founder: The Women's Caucus of ACT UP/LA

1990

Worked for AIDS Healthcare Foundation (AHF) and Chris Brownlie Hospice

1991-1992

Participating Member: The Women's Advisory Board of Search Alliance

1991-1993

Worked with a consortium of local AIDS Service Organizations to create and implement the first annual "Women and HIV Conference" in Los Angeles

1992

Created a committee of AIDS activists to address prisoners with HIV/AIDS.

1991

AIDS Project Los Angeles, AIDS Coalition to Unleash Power/Los Angeles and Being Alive Created and implemented ongoing support group for HIV positive women

1991-1993

Trainer and program specialist for Prototypes, a treatment center for women with addiction in Los Angeles

1992

Early HIV Treatment Trainer, PROTOTYPES. Conduct trainings to educate drug rehabilitation counselors about HIV/AIDS

1993

Co-founded Women Alive Coalition with Nancy MacNeil and others

1993-1995

Founding director of Prototypes WomensCare Health Center, a care facility for women with HIV, implementing services and helping people secure resources

1994-2002

Worked as a policy analyst and eventually interim AIDS coordinator at the City AIDS coordinator’s office where she funded the first needle exchange project called Clean Needles Now, today known as the LA Community Health project

1997

Raised funding for the 1997 National Conference on Women and AIDS held at the Convention Hall of the Los Angeles Staples Center

2021

Mary, Nancy MacNeil, Jordan Peimer, Helene Schpak and Judy Ornelas Sisneros launch the ACT UP Los Angeles Oral History Project