Linda Laubenstein and the kindness of a fighter

In the early years of the AIDS crisis, one woman fought for her patients against the odds. Linda Laubenstein's story led Gabriella Knowler to consider her own approach to science.

 Illustration by  Meg Gough-Brooks

Illustration by Meg Gough-Brooks

Model Specimens is a monthly column that explores the role models who inspired today's scientists. This month, Gabriella Knowler discusses her admiration for Linda Laubenstein, a physician who fought hard for patients who were ignored by most.

Whilst struggling to decide on a subject for my final year of university, I was drawn to the cutting-edge gene-editing techniques being used develop a potential cure for HIV. During my research, I stumbled upon the first paper ever published observing the emergence of AIDS. This landmark paper was written by a physician whose life was so impactful on my own, that I have felt compelled to tell her story again and again.

Learning about Dr Linda Laubenstein and the early years of HIV/AIDS taught me the importance of considering the bigger picture when studying science and the devastating impact that poor communication between the scientific community, the public and the government can have. Laubenstein’s story in particular taught me the empathy and the courage you need to address these issues honestly, and the hard work it can take to make sure a story gets heard. Linda Laubenstein was a Manhattan physician and an important scientific figure in the fight against AIDS, but she was also a pioneer, a political campaigner and a true humanitarian.

What initially drew me to read more about Laubenstein was not necessarily what she did, but what she did it in the face of. Linda Laubenstein was born in 1947 in Boston, but before her fifth birthday she was wheelchair-bound due to an aggressive case of polio. Despite this, she graduated from New York University School of Medicine and became a clinical professor at the New York University Medical Centre by 1978, an enormous challenge for a disabled woman in science during the 70s.

However, the greatest challenge was yet to come.  

In 1981, a rare skin cancer, Kaposi's sarcoma, was spreading through New York like nothing that had ever been seen before. Cases of this rare cancer were rising due to an unexplained collapse of the immune system — predominantly among young gay men. It was unknown at the time that this immune system collapse was caused by acquired immune deficiency syndrome (AIDS).

One of the first patients with AIDS arrived in Laubenstein's practice in 1981. He was a 33-year-old man with two purple spots behind his ears. He responded to cancer drugs initially, but just 18 months later he had died with 75 lesions covering his body.

In response, Laubenstein took immediate action. She left her university professorship and dedicated her full attention to the care and treatment of her patients. According to her obituary in the New York Times, she foresaw the scale of what was to come. Her father, George, recalled, "She told us from the very beginning that this is going to be a terrible epidemic."

Laubenstein published the first paper (the same one I read when deciding which course to take) to appear in a medical journal on the alarming rise in Kaposi's sarcoma with her colleague Dr Alvin Friedman-Kien in 1981. Just one year later, her private practice saw 62 cases — a quarter of all reported cases nationwide. Together, Laubenstein and Friedman-Kien worked tirelessly to gather support for AIDS research, including arranging the first full-scale medical conference on AIDS and founding the Kaposi's Sarcoma Research Fund.

The ultimate AIDS physician

Whilst her decisiveness in action took a lot of courage, it is her work throughout the 1980s that makes me admire her the most. Her work in her private practice was a physician's response to a terrifying outbreak, but her patient care and commitment to political outreach were evidence of how much she cared for everyone affected by the disease.

Her colleague Dr Jeffrey Greene described Laubenstein in her obituary as the ultimate AIDS physician: “She was sicker than most of her patients but didn’t let it stop her.” She would visit patients in the emergency room in the middle of the night, make house calls by New York City transit bus and went to the funeral of every patient she lost. Even in terms of the number of patients she was treating in her practice, Laubenstein was doing more than many physicians at the time.

But she didn’t stop there. Linda noticed that patients often lost their jobs once their condition worsened, and she believed that patients needed employment for their emotional wellbeing. So, in 1989, Linda opened a non-profit organisation with Greene called Multitasking Services, which sold office services and employed solely AIDS patients.

But make no mistake, Laubenstein was no Mother Teresa figure. She was incredibly angry about the lack of care shown by those who were aware of the growing crisis and still refused to do anything about it. Many physicians refused to see AIDS patients, and in return Laubenstein refused to stay quiet about their discrimination. Laubenstein was also openly critical of the American government and their lack of action, accusing them of neglect and ignoring the suffering of the gay community.

Whilst campaigning, she befriended AIDS activist and playwright Larry Kramer after caring for his partner. Kramer remembers Laubenstein fondly as "incredibly important in the history of AIDS, a genuine pioneer and a real fighter for what she believed". Kramer would later base the character Emma Brookner in his play The Normal Heart on Laubenstein in a hope to "enshrine her legacy forever".

Gone, but not forgotten

Laubenstein died in 1992 when she was just 45. But despite her short life, she is rightly remembered to be one of the most important figures in the early fight against HIV/AIDS. The AIDS Institute Dr. Linda Laubenstein Annual HIV Clinical Excellence Award showcases her legacy by highlighting those who also show incredible compassion and a comprehensive approach to patient care.

During my final year of study, as I read about the advanced genetics techniques that will eventually cure HIV, Laubenstein’s story was always in the forefront of my mind. As a researcher, it's easy to get swept up in intricate techniques and novel methods. While I was impressed by the brilliance behind these discoveries, Laubenstein showed me that we need people who are kind and passionate as well as brilliant. Why do research if we don't care?

It also prompted me to think about the wider story that led to the AIDS crisis. I wondered if the whole crisis was inevitable, or whether it was made worse by a perfect storm of poor communication, mystery and panic. What if there had been open discussion of AIDS, with the intention of promoting understanding and empathy, rather than the disparaging silence that only enforced the growing fear? I couldn’t help but draw parallels between the AIDS crisis and other epidemics happening in the world, such as Ebola and Zika. Could better, more effective science communication prevent a repeat of history? 

Laubenstein’s life is a lesson in conviction and the courage it takes to act wholeheartedly, regardless of your chance of success. It’s been several years since I first read her story and I still take every opportunity I can to write and talk about the early story of HIV/AIDS in an effort to ensure that it’s not forgotten. There is a whole generation, my generation, that doesn’t know what happened. I believe that there are so many lessons we can learn from this story that it deserves to be heard. Science communication is not only for showcasing breakthroughs and discussing the future, but also to remind us of where we have come from, so we can apply those lessons today.

Edited by Deborah Kane