My Time with Larry

Larry Kramer, the playwright and AIDS activist, died yesterday at age 84. He left his mark in two different worlds – the arts and health care. He changed me, too.

I was sad to read of his passing but this is not an obituary covering all the details of his dynamic life; it’s a brief reflection starting when we met in 1988. I was the chief representative to the HIV/AIDS and oncology patient communities at drug giant Hoffmann-La Roche and he was on the other side of a conference room table. His first comment to me was, “Bristol-Myers met us in a nicer hotel.”

The year before, I joined the company’s Public Affairs department from the R&D group. There was a need for someone with a technical background to help explain what was coming out of the labs to the general public. I landed in the role and immediately found myself in the middle of history. Roche was one of only three companies at the time that had a late-stage anti-HIV drug development program. Burroughs Wellcome (now part of Glaxo) had the first marketed product, Retrovir®/AZT. Bristol-Myers (now Bristol-Myers Squibb) and Roche had retroviral analogs in the pipeline.

Burroughs Wellcome was reviled by the AIDS community Larry helped to organize. Drug prices were high and communication from the company was absent. There were no best practices, no case studies on how to communicate with patients. It simply wasn’t done. Companies would inform the “learned intermediary” – the physician – and he or she would communicate with the patient.

Today, there’s at least one patient advocacy organization for any given disease. There were only a handful of AIDS groups in those days. Larry and others paved the way for all the rest.

Bristol-Myers decided to meet with the AIDS groups and I began my campaign to convince Roche management to do the same. I remember making a presentation to the Executive Committee and quoted Lincoln: “As our case is new, so we must think anew, and act anew.” It wasn’t the easiest sell. But people realized there were both ethical and business considerations at play – many of the activists were patients trying to save their own lives, and they were phenomenally organized and well informed. The potential benefits of hearing the patients’ point of view and adjusting our own plans were new and valuable concepts.

A letter from Larry’s organization, ACT UP (the AIDS Coalition to Unleash Power) was the catalyst for our first meeting. He once said, “If you write a calm letter and fax it to nobody, it sinks like a brick in the Hudson.” The demands in the letter were copied to a long list of top-tier news media, members of Congress, AIDS activists, and health care policy makers. I wrote back, explained our research initiative, agreed to meet, and copied back the entire list.

Then, my phone rang. “What are you doing writing back to all my constituents?,” he barked. I said, “They’re our constituents, too.”

That was a pivotal moment. Yes, I gained some respect by coming right back at him but the truly important piece was that first step we took into a common ground. Our constituency was their constituency and everyone wanted new, effective medications in the hands of patients as soon as possible. The two “sides” worked to expand access to experimental therapeutics, enroll patients into clinical trials, support NIH funding, and lobby for FDA reform to speed drug reviews and approvals.

The world was changing. The normal course of business – the normal course of life – was disrupted. But progress was made – advancements in understanding and equality, as well as advancements in medical science.

Larry was called a troublemaker and much worse. But at least there was talk back then and a respect for science. It’s worth noting that ACT UP’s slogan was Silence = Death. With COVID-19, I’m afraid Silence has been replaced by Division and Ignorance. Maybe a little Larry Kramer-style agitation wouldn’t be such a bad thing to get people think about the state of our society and the status of our health care system.

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