Mathilde Krim, an indefatigable fighter against the virus that causes AIDS and a stalwart champion of those infected with it, died this week at age 91. Her death is a loss for the HIV/AIDS community, and for me personally.

Krim saved my life — although not exactly in a way I could have imagined — and it was more than a decade before I could tell her my story and thank her on behalf of so many others.

In the spring of 1986, I noticed a purplish lesion on my calf. Fearing it was Kaposi’s sarcoma, a cancer inevitably linked to AIDS, my doctor biopsied it. The natural next step should have been a blood test for HIV, but my doctor jettisoned scientific protocol and instead told the lead pathologist that I was gay. In a rush to judgment, the pathologist wrongly determined that it was Kaposi’s.

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At the time, doctors, like most Americans, “felt that this was a disease that resulted from a sleazy lifestyle, drugs or kinky sex — that certain people had learned their lesson and it served them right,” Krim told a reporter. With only my sexual orientation and a faulty biopsy to guide them, the team diagnosed me with AIDS. I was told to “go home and get used to the idea of dying.”

I had never met Krim, a triple-threat cancer researcher, fundraiser, and activist, but I knew that she stood front and center in the fight against AIDS. In that era, with no effective treatment and a fatality rate close to 100 percent, my salvation — and that of tens of thousands of others infected with HIV — could come only from science. Krim, the founding chair of what was then called the American Foundation for AIDS Research (now known as amfAR), was the face and voice of that science. Having been diagnosed with AIDS, I looked to her as a savior.

I eventually found my way to a specialist who had a large AIDS practice in San Francisco. Like Krim, this doctor believed in the scientific method and had a no-judgment policy about the sexual identity or practices of his patients. He performed an HIV test — it was negative. He sent the slides of my biopsy to a different lab, where pathologists scrutinized them through microscopes instead of interpreting my purple mark as the scarlet letter of AIDS.

The bump on my calf turned out to be a dermatofibroma, a garden-variety skin lesion. I now had a correct diagnosis based on evidence, not fear or prejudice. I did not have AIDS.

Those early years of the epidemic were a time when fear, not facts, drove public opinion. Near pandemonium ensued after it became known that Rock Hudson — who had only recently locked lips with his “Dynasty” co-star Linda Evans on prime time TV — had AIDS. In Arcadia, Fla., three hemophiliac boys infected with HIV had their house firebombed in an attempt to run them out of town. Even the once highly regarded and seemingly intelligent conservative commentator William F. Buckley advocated in the New York Times, “Everyone detected with AIDS should be tattooed …” much as the Nazis did to the Jews.

Krim refused to be swayed by such attitudes. In fact, they seemed to spur her and, by extension, amfAR, to a deeper focus on public policy. In personal testimony to the National Commission on AIDS, she said frankly, “The AIDS crisis has also become a crisis of public confusion … and a moral crisis. … It is important that leadership in the AIDS crisis include countering prejudice and discrimination.”

As a young gay man, terrified by both the plague and the political rhetoric, I found comfort in her words. When asked by a New York Times reporter in 1984 why she had gotten involved in this cause, she replied sharply, “Because I was incensed!” She added, ”So many young men were dying, mostly intelligent and sophisticated young men, some of the city’s best products. And many would be dying abandoned or alone because they were afraid to contact their families.”

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When others seemed not to care, she was there. It didn’t matter that we didn’t know her. Krim knew us.

In a Facebook post announcing her death, Peter Staley, a veteran AIDS activist, remembered Krim as his “greatest AIDS hero,” a warrior against homophobia and stigma, and a defender of science and public health. He called her a “mother-figure and mentor.” Those words resonate with me, and with so many others like me who for so long looked to Krim for hope.

I finally met Krim a dozen years after my misdiagnosis, when I was hired to work with her on writing amfAR’s annual report. We had a series of meetings at her elegant townhouse in Manhattan. After completing my tasks, I thanked her for all she had done to save so many lives. In a high-backed chair, cigarette in hand, and her hair in that trademark golden bun, Krim waved off my gratitude. With a generosity of spirit that belongs to a past era, she praised many less famous men and women who had soldiered with her in the fight against AIDS, many of whom had died by that time. Krim ended our conversation by paraphrasing this quote of hers: “Most people start with this idea that they can’t do anything because ‘I’m only a little guy and I can’t have an effect on public policy.’ It’s not so. Everybody can do something.”

Wise words then and now.

Steven Petrow has written about the HIV/AIDS epidemic for more than three decades, including an oral history, “Dancing Against the Darkness: A Journey Across America in the Age of AIDS” (Lexington Books, 1990). He is now a columnist for USA Today, a contributing writer to the Washington Post, and a past president of the National Lesbian & Gay Journalists Association.

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  • Like the author, I had a great admiration of Milthilde and hope she rests in peace. Her contributions to the epidemic were strategic for her purposes and immeasurable for the rest of us. She was short in stature, huge in intellect and compassion and a lamp for the world on how to move beyond fear into action. Her presence and passion were formidable and at the time I was kicking doors and taking names for the coming LGBTQ social change, so rarely impressed by most people I met. Mathilde was clearly a force onto herself.

    Working in the initial health care response to HIV/AIDS often felt like inching cautiously through a long, dark tunnel with only a hand full of matches and the roar of a bulldozer called epidemic filling the entire cavern behind and nudging relentlessly at our heels, threatening to run us all down.

    Mathilde brought a lantern to light the path, a boom box playing a symphony to drown the noise and calm our fears and other resources. Never one to mince words she was my kind of woman/mentor/leader/advocate. In Boston she enabled Fenway Health to incubate and then spin out the Community Research Initiative to get our research of this disease out from under the academic/hospital/publishing cycles that felt like a black hole sucking our patients and research findings into this irretrievable and therefore useless vortex. She helped us to create a model for the nation on bringing academic level research among physicians out into the streets, the health centers, the schools and the alleys where the disease was festering unattended.

    Mathilde did that with AMFAR. But more than that, she evened up the finance/resource see-saw so that those of us on the front lines in hand-to-hand combat with the epidemic had some of the same resources as the giant hospitals. We were able to reach the people with care through that research funding instead of leaving their food sitting in trays in the hallways as many hospital care givers fled from the profession to avoid contact with the disease.

    I thanked her then. I thank her again for all the live she saved through us and nationally those just like us on the way to effective treatment for what became a chronic and manageable disease.

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