Linda Laubenstein, 45, Physician And Leader in Detection of AIDS
By BRUCE LAMBERT Published: August 17, 1992
Linda J. Laubenstein, a Manhattan physician who in 1981 discovered some of the first mysterious cases of what became the worldwide AIDS epidemic, died on Saturday at her summer home in Chatham, Mass., on Cape Cod. She was 45 years old.
Her family said an autopsy was pending. She suffered from severe asthma and weakness from childhood polio, an illness that required three major operations and left her a paraplegic at the age of 5.
“She is incredibly important in the history of AIDS, a genuine pioneer and a real fighter for what she believed,” said Larry Kramer, an author and a leader in AIDS causes.
Dr. Laubenstein inspired the character of Dr. Emma Brookner, a principal role in Mr. Kramer’s play on acquired immune deficiency syndrome, “The Normal Heart.” He said an agreement was near on the production of a movie version by Barbra Streisand, with Ms. Streisand playing the Laubenstein-Brookner part.
Dr. Jeffrey B. Greene, a colleague, called Dr. Laubenstein “the ultimate AIDS physician.” Despite her handicap, she met patients in the emergency room in the middle of the night and even made house calls, using her motorized wheelchair and public buses. “She was sicker than most of her patients but didn’t let it stop her,” Dr. Greene said.
First Paper on Subject
Dr. Laubenstein and Dr. Alvin Friedman-Kien wrote the first paper to be published in a medical journal on the alarming appearance of Kaposi’s sarcoma, a previously rare disease of lesions of the skin and other tissues. Most of the cases were in young gay men suffering a puzzling collapse of the immune system.
Recalling one of the first cases, she described a 33-year-old man with two purple spots behind his ears. Initially he responded to the cancer drugs she prescribed. But 18 months later he was dead, his body covered with 75 lesions.
Many more cases followed. By May 1982, she had seen 62 patients with AIDS – a fourth of the national total recorded at the time. She said then that “this problem certainly is not going away.”
Her father, George Laubenstein, said yesterday, “She told us from the very beginning that this is going to be a terrible epidemic.”
Dr. Laubenstein’s private practice grew to be predominantly AIDS cases. She and Dr. Freidman-Kien arranged the first full-scale medical conference on AIDS, at New York University in 1983. She also help to found the Kaposi’s Sarcoma Research Fund in 1983.
Jobs in Office Services
In 1989, she and Dr. Greene founded Multitasking, a nonprofit organization selling office services to other businesses and employing people with AIDS as the workers. Her concern was that AIDS patients often lost their jobs and that work was vital to emotional and physical health as well as for financial support.
Dr. Laubenstein was outspoken about what she said was the neglect by government and society in fighting AIDS. Some of her views were controversial among gay groups, particularly her belief that bathhouses should be shut down to discourage unsafe sex.
Born in Boston, she grew up in Barrington, R.I. She graduated from Barnard College and New York University Medical School. Her specialties were hematology and oncology, and she was a clinical professor at the New York University Medical Center.
Surviving are her parents, George and Priscilla of Harwich Port, Mass., and a brother, Peter of Melvin Village, N.H.
Coming this week: Tumblr Teach-In about The Normal Heart
Hello friends, as promised, here are some more details about our planned Tumblr teach-in to accompany HBO’s adaptation of The Normal Heart. This is a group effort, so please feel free to hit the ask box at any time with questions.
As two people who have been active in various AIDS-related organizations and activism, it’s important to us that we help build on the attention and excitement about this powerful film by adding context and encouraging additional discussion. (And we know we can’t do that alone.)
Each day this week, we’ll curate/moderate/reblog/post with a focus on one themed topic about the AIDS epidemic, with an emphasis on the early years before and shortly after the era of The Normal Heart. Anyone is welcome to submit posts, or tag posts (see guidelines before) at any time, and we’ll continue the reblogging cycle as new content comes in even if it’s after that theme’s day is over.
MONDAY MAY 29: INTRO TO THE EARLY AIDS EPIDEMIC
TUESDAY MAY 30: WHAT ABOUT WOMEN?
WEDNESDAY MAY 31: WHAT ABOUT PEOPLE OF COLOR?
THURSDAY JUNE 1: SAFER SEX & SEXUAL POLITICS
FRIDAY JUNE 2: ART, LITERATURE & MEDIA RESPONSES
SATURDAY JUNE 3: POLICY, ACT UP & AIDS INC.
We’re also planning daily posts about Larry Kramer related to each of those themes.
If you’d like to contribute beyond simply submitting/tagging posts, we’re looking for someone to do a kick-off post for each of the themed days. This could be pretty simple - a particularly strong post you want to reblog plus some additional links/resources - or be more like a background primer if you were so motivated. michelet is handling Saturday’s policy post; shananaomi will head up Wednesday’s safer sex intro.
Here are folks who previously raised their hands to say they might want to help: @sensatesoul, schindermania, @lettersfromtitan, wowbright
with the relevant theme’s tag (suggestions welcome):
women and HIV/AIDS
POC and HIV/AIDS
safer sex and HIV/AIDS
HIV/AIDS activism and policy
Ask us anything. We’re doing this on Tumblr because we love the Tumblr community (and its tools, for the most part!), so more than anything we want to encourage that fuck-yeah enthusiasm and excited piling on.
[Over the course of the 1990s, people with breast cancer,] chronic fatigue, multiple chemical sensitivity, prostate cancer, mental illness, Lyme disease, Lou Gehrig’s disease, Alzheimer’s, and a host of other conditions have displayed a new militancy and demanded a voice in how their conditions are conceptualized, treated, and researched. These groups have criticized not only the quality of their care but the ethics of clinical research (“Are placebo controls [in medical trials] acceptable?”) and the assignment of control over research directions (“Who decides which presentations belong on a conference program?”). While not every such group derives its approaches directly from AIDS activism, the tactics and political vocabulary of organizations like ACT UP would seem, at a minimum, to be “in the wind.” …Bernadine Healey, then director of the NIH, expressed it well in 1992 when she told a reporter: “The AIDS activists have led the way…. [They] have created a template for all activist groups looking for a cure.”
Breast cancer activism is an intriguing instance of this new wave, because the links to AIDS activism have been so explicit and so readily acknowledged. In 1991, more than 180 US advocacy groups came together to form the National Breast Cancer Coalition. “They say they’ve had it with politicians and physicians and scientists who ‘there, there’ them with studies and statistics that suggest the disease is under control,” read a prominent account in the New York Times Sunday Magazine. In its first year of operation, the coalition convinced Congress to step up funding for breast cancer research by $43 million, an increase of almost 50 percent. “The next year, armed with data from a seminar they financed, the women asked for… and won a whopping $500 million more.” The debt to AIDS activism was widely noted by activists and commentators alike. “They showed us how to get through to the Government,” said a Bay Area breast cancer patient and organizer. “They took on an archaic system and turned it around while we have been quietly dying.”
From Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (University of California Press, 1996), 348-9.
(Also worth remembering that until the mid-1980s, women were not included in any federally-funded clinical medical trials. Including tests of breast cancer drugs. Feminist healthcare activists changed that, but HIV/AIDS activists helped add pressure to make sure the population of clinical trials looked like the population that needed the drug.)