A legacy of compassion

from Los Angeles Blade, Volume 07, Issue 09, March 03, 2023

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Mary Lucey, Nancy MacNeil used outside activism to impact inside policy

By KAREN OCAMB

Mary Lucey’s eyes told all. ACT UP/LA’s ﬁrebrand was grounded, determined but deferred to Judy Cagle, the trembling center of the April 1, 1992 news conference at Being Alive’s Silver Lake headquarters. Cagle’s compassionate release from the California Institute for Women in Frontera ﬁve days earlier enabled the 37-year-old mother of a 16-year-old son to go home to die of AIDS.

Mary, also formerly incarcerated and diagnosed with HIV/ AIDS, had been ﬁghting for Cagle’s freedom for two years. Listening to Cagle beseech the public to care about women inmates, Mary’s eyes betrayed the moral burden she bore with anger, anguish, love and compassion.

Nancy was ﬁghting back with physical therapy, though she had become noticeably quieter. Mary — who was in constant pain — was her stubborn, brave primary care provider. Nancy died of natural causes. The cause of Mary’s death is still undetermined.

Timer, their old mixed boy, looked for them after almost everyone left. The sweet animal orphan is being cared for by a member of Mary and Nancy’s community.”

Boulevard. The Coalition for Compassion urged the Food and Drug Administration to add a parallel track to their glacier testing procedure and release experiential drugs to PWAs as compassionate triage. Luckily, writer Bruce Mirken joined ACT UP/LA and reported for the LA Reader on activism, scientiﬁc developments, and the pharmaceutical alphabet of AIDS drugs like AZT and ddi. I wrote about policy, politics and events that challenged and deepened our humanity in the face of death.

“I want people I left behind to know I love them,” Cagle, who would die six months later, told reporters. “Just don’t give up. You’ve got to ﬁght. You’ve got to know your lives are important.”

Mary felt the same, as she shared with HIV Plus magazine: “After I was released from prison, I felt I could not turn my back on women who still suﬀer behind bars. It is our responsibility to continue to bring attention to the cruelty that people with HIV/AIDS face in the prison system.”

That was the Mary Lucey I met in 1990 after she joined ACT UP/LA (the Los Angeles branch of the AIDS Coalition to Unleash Power) and fell in love with Nancy MacNeil, the HIV-negative leftist AIDS activist who became her constant companion and future wife. Though I thought Nancy eyed me with suspicion and enjoyed the dyke art of intimidation, I was taken by their love story. Like Paul Monette and Stephen Kolzak (and later, Winston Wilde) andJeff Schuerholz and Pete Jimenez, the ACT UP/LA couple defied death and danced with delight in a civil rights and healthcare minefield.

For Mary and Nancy, the dance ended unexpectedly on Saturday, Feb. 11. Mary got up and started to prepare breakfast, letting Nancy sleep in as usual, close friends say. But when she checked on Nancy, she found her beloved unresponsive. Nancy had died.

Mary called her neighbor and Jeff Schuerholz, her very close friend from ACT UP/LA. Jeff immediately called another close friend, Keiko Lane and the two promised to speed up to Oceano in San Luis Obispo County, 174 miles north on US101 from Los Angeles. Mary was excited for them to come up. However, when Keiko and her partner Lisa picked Jeff up, a family member called to say Mary had also suddenly passed away.

Both women had complicated health issues. After one accidental bone-breaking fall and several back surgeries,

Learning how to be there for people with AIDS (PWAs) was terrifying, loving, infuriating and ultimately, spiritual. After I left the mainstream press in 1984 and started getting involved in the West Hollywood community, I noticed that some of my gay 12 Step friends were getting sick and disappearing. I found them isolated in hospitals where nurses left food outside and we were forced to wear masks and gowns and not touch them. I felt powerless. I didn’t know what to do except not judge and be of service. I took people to doctors’ appointments. I cleaned up messes, consoling friends deeply ashamed about their uncontrollable vulnerability and loss of dignity. I sat at bedsides. I learned that if a friend lashed out in anger it was because he trusted that I wouldn’t leave. I learned to talk about death and how to help my friends die. And like so many others, I searched for spiritual meaning in this ignored growing decimation of human beings.

I longed for a storm of rage from which an army of ghost-bearers would arise to confront this casual hate spewing from government to next door neighbors. Finally, in March 1987, a phalanx of the ﬁrst wave of ACT UP resisters emerged in New York, harangued into being by curmudgeon playwright Larry Kramer.

ACT UP/LA’s trans AIDS Diva Connie Norman taught me about the range of AIDS issues. Mary Lucey was my second teacher, stressing the invisibility of women and lesbians with AIDS – something I missed because of the active leadership of Connie, Mary, Nancy, Judy Ornelas Sisneros, Patt Riese, Helene Schpak, Keiko Lane, Terry Ford, Mary Nalick, Cindy Crogan, Robin Podolsky, Stephanie Boggs, and Roxy Ventola McGrath, whose remembrance was written by her friend Nancy with whom she, Mary and others co-founded Women Alive, an empowerment organization for women with HIV/AIDS.

“Roxy made us promise to keep fighting. She told Mary to continue to be loud and rude and in people’s faces! She told her to keep doing AIDS activism and AIDS work in whatever capacity that she could be effective for as long as she is healthy enough,” wrote Nancy, Women Alive’s founding executive director. “She told me to keep writing, to tell the women’s stories and give them information about the disease, and try to inspire women into action. She asked me to write about courage and foresight, and to keep trying to give women the incentive to fight back.

‘You’ll write the story, won’t you, Nan?’ Yeah, Rox, I’ll write it. But, you gotta tell it, OK? ‘No,’ she says, ‘I lived it, you tell it.’”

A native Angelino, Nancy Jean MacNeil was both a street and information activist.

ACT UP/LA, founded in December 1987, held meetings in Plummer Park, West Hollywood. I thought about joining, but decided I could best serve as an eyewitness to history with the gay press instead. My ﬁrst freelance story for Frontiers Newsmagazine was “Ten Days that Shook the FDA,” focused primarily on the hunger strike by PWAs Wayne Karr and Lou Lance in August 1989 at Crescent Heights and Santa Monica

Schooled by police brutality during student protests against the Vietnam War and as a member of the Black Panther Party, Nancy attended the Institute for The Study of Nonviolence in Palo Alto and became an activist and organizer in the gay, lesbian, women’s and Lavender Left movements of the 1970s and 1980s. In 1982, she lost her first friend to AIDS. Julian Turk had been diagnosed by Dr. Michael Gottlieb at UCLA, one of the first identified with the mysterious new disease.

In 1990, after attending the first Women’s Caucus meeting, Nancy joined ACT UP/LA and applied her organizing and protest skills to fighting AIDS. She and Mary advocated for women prisoners and shouted at the CDC, the FDA, the National Institutes for Health and medical researchers to wake up and recognize that their government-funded treatment studies barred women of childbearing age from participating in clinical trials — thus ignoring how women’s bodies might react differently to dosages and drug treatments. Additionally, the exclusion of women in the CDC’s definition of AIDS meant women could not get insurance coverage or qualify for Social Security disability.

Nancy shrugged oﬀ living in Mary’s media shadow, such as when Mary was dubbed “The Woman Warrior” by the Washington Post in an Oct. 1, 1991 story about ACT UP and the march on Congress as part of the second AIDS Treatment Activists Conference (ATAC2).

“The Woman Warrior Mary Lucey, 32, a former bus driver and blacksmith and ex-con from Los Angeles, woke up to the ﬁght against AIDS two years ago when she was six months pregnant and learned she was HIV-positive. She couldn’t ﬁnd a doctor to deliver her baby. Not in Riverside County, where she lived then, or in all of L.A. What she found instead were doctors who prescribed huge doses of AZT that made her lose 50 pounds during her pregnancy. She also found a cause,” the Post wrote. “(Worried by the probability that she had only a few years to live and wouldn’t be able to raise her child, she gave up her baby, who was born in San Francisco, to a couple who have other foster children.)

“‘A lot of women don’t have the inner strength to ﬁght…But I don’t take no for an answer. So, I became an activist,’” Mary told the Post. ‘We don’t know how many women have AIDS. Doctors say you’re not at risk. They don’t even include us in AIDS death statistics. My main concern is to get them treated.’”

Mary and Nancy were in Washington DC on Sept. 30, 1991 when Republican Gov. Pete Wilson vetoed AB 101, the gays rights bill he had promised to sign. Though the streets of LA were strewn with thousands of LGBTQ activists, PWAs and HIV-positive protesters, AIDS had taken a back seat to the politics of the time though Democratic presidential nominee Arkansas Gov. Bill Clinton talked about ending the AIDS crisis in challenging Republican President George H.W. Bush, branded with the Reagan-Bush stain of death.

Then came the unexpected. On Nov. 7, 1991, LA Lakers superstar Earvin “Magic” Johnson, 32, held a press conference announcing that he was HIV positive. The world gasped. Magic didn’t look gay or sick — which meant women could “catch” AIDS, too. Suddenly, the “Women and HIV: Facing the Epidemic” conference at UCLA two days later was packed.

Dr. Julian Falutz told the UCLA conference that AIDS had become one of the top ﬁve causes of death for women between the ages of 20 and 40 and the leading cause of death among Black women in that age range.

“We’ve been ignored,” Mary told the LA Times. “Women are starving for information. It’s been a need for a long time.”

Nancy and Mary were also members of the ACT UP National Women’s Committee and Nancy – hired by ACT UP/ LA member and Being Alive executive director Ferd Eggan to work for the AIDS organization — used her highly regarded Women Alive newsletter to push issues and actions, including forcing the CDC to change their AIDS deﬁnition to include women-speciﬁc diseases, opportunistic infections and medical ailments.

In New York, Katrina Haslip, a formerly incarcerated Black Muslim woman, was also a strong voice demanding a new CDC deﬁnition, according to ACT UP/NY historian Sarah Schulman. A direct action campaign organized by Haslip and a slew of others “lasted for four years,” Lux Magazine reported in a story about Sarah’s monumental book, “and was led by women of color, poor women, formerly incarcerated women, and lesbians who rallied together under the slogan, ‘Women Don’t Get AIDS, We Just Die from It.’” committee “as founding member, visual artist Renée Edgington, recruited more volunteers to launch (Clean Needles Now),” reported X-traonline.org

On Jan. 1, 1993, the CDC officially revised their AIDS definition, adding, among other symptoms, cervical cancer, cervical dysplasia, pelvic inflammatory disease, and infections such as vaginal candidiasis or chronic yeast infections.

Three months later, during the April 1993 March on Washington, Mary and Nancy were among 19 members of ACT UP Network’s Lesbian Caucus who met with Health and Human Services Secretary Donna Shalala who forms lesbian AIDS task force. The CDC subsequently funds lesbian-speciﬁc prevention programs and NIH ﬁnally studies lesbians.

But California’s drug paraphernalia laws made possessing and distributing syringes a crime. Assembly Speaker Willie Brown and LA State Senator Diane Watson passed two bills in the California Legislature to decriminalize needle exchange – but Gov. Pete Wilson vetoed both, claiming the programs would become “a magnet for IV drug users.”

In the late 1980s and early 1990s, ACT UP/LA brought urgent visibility to the dire need for expanded hours, rooms and services at LA County’s horrendously overcrowded AIDS Outpatient Clinic known as 5P21 and for an AIDS unit at County USC Hospital. “We are tired of government bureaucracy telling us it doesn’t matter. We are tired of government genocide,” Connie Norman told the LA Times.

Deemed “militant” because of their rude, in-your-face tactics, ACT UP/LA and Queer Nation organizers frightened producers of the March 25,1991 Academy Awards at the Shrine Auditorium and the 1992 Oscars at the Dorothy Chandler Pavilion but most of the AIDS and gay media visibility resulted from attendees wearing the new AIDS Red Ribbons created by Visual AIDS.

Meanwhile, in 1991 another hidden group — injection drug users sharing dirty needles — was starting to draw attention within ACT UP/LA. “Initially the needle exchange committee attracted people from diﬀerent committees, including novelist Steven Corbin” from ACT UP’s People of Color Caucus. The

Additionally, there was concern that the needle exchange committee pulled money for syringes and other supplies out of the general fund, cutting into money available for other ACT UP/LA actions such as the huge bus trip to Frontera women’s prison on Nov. 30,1990 to protest the segregated substandard AIDS ward, Walker A. Mary spent 18 months at Frontera and was keenly aware of the lack of proper nutrition, medications and qualiﬁed medical staﬀ. On May 4, 1992, ACT UP/LA organized a statewide protest at the California Department of Corrections in Sacramento which mainstream media ignored.

In 1993, new LA Mayor Richard Riordan appointed Ferd Eggan as the city’s third AIDS Coordinator. Ferd brought Nancy with him and hired Mary as a City AIDS Policy Analyst. By then, Mary had become adept at public hearings, including one before the CDC in 1992 on changing the deﬁnition of AIDS that was turned into a play in 2020 entitled “I, of Course, Was Livid.”

“The outcome of this hearing will have a profound impact on my survival. And yet, a more oﬀensive and revolting fact is that we die without even being counted, as if our lives didn’t mean anything. Don’t our lives count? Then count our deaths,” writer Terri Wilder recalled Mary as saying. The play’s author, Valerie Reyes-Jimenez, noted that the CDC cut oﬀ Mary’s mic in the middle of her speaking. “She was telling the truth, and the truth was really uncomfortable,” she said. Nancy plugged the mic back in.

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IMPORTANT FACTS FOR BIKTARVY®

This is only a brief summary of important information about BIKTARVY and does not replace talking to your healthcare provider about your condition and your treatment.

Most Important Information About Biktarvy

BIKTARVY may cause serious side e ects, including:

 Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without ﬁrst talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

About Biktarvy

BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

Do NOT take BIKTARVY if you also take a medicine that contains:

 dofetilide

 rifampin

 any other medicines to treat HIV-1

Before Taking Biktarvy

Tell your healthcare provider if you:

 Have or have had any kidney or liver problems, including hepatitis infection.

 Have any other health problems.

 Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY.

 Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Tell your healthcare provider about all the medicines you take:

 Keep a list that includes all prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

 BIKTARVY and other medicines may a ect each other. Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

(bik-TAR-vee)

Possible Side Effects Of Biktarvy

BIKTARVY may cause serious side e ects, including:

 Those in the “Most Important Information About BIKTARVY” section.

 Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.

 Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY.

 Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

 Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, lightcolored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

 The most common side e ects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

These are not all the possible side e ects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY.

You are encouraged to report negative side e ects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.