When Sidney Wolfe died on New Years Day, I lost a friend, DES Action lost a hero, and health advocacy lost a lion.
When I was appointed to the Consumer Rep position on the FDA’s Drugs Safety and Risk Management Advisory Committee in 2017, I reached out to the two previous consumer reps (MDs both) who had held the position before me, asking for their advice. Of the two, Sidney Wolfe called me.
Sid was trained and licensed as an MD, but pivoted to drug safety advocacy work early in his career. He was the face and energy of the Health Research Group division of Public Citizen that he started with Ralph Nader at the beginning of the 1970s. Over the last fifty plus years his work on drug safety resulted in 28 drugs removed from the market and safety labels added to countless more. His book and website, Best Pills, Worst Pills is a key reference work for anyone interested in drug safety.
I was nearly unable to talk at first in that unexpected call, but his direct style of speaking pushed aside my hesitation. There was no small talk. He congratulated me on the new position and asked about my background and interest in medical safety. I told him about my exposure to DES and he told me of his involvement in the early, dark days of DES when DES Action did some of it’s finest work in creating education campaigns, building support networks of DES-exposed people, working with research groups at universities and in the NIH, lobbying local, state and federal electeds to get funding for education and research.
I was not involved with DES Action back in the 1970s when Sid was a key advocate for DES Action in Washington, increasing awareness, helping to get research funded and advising the DES Action leadership. That day seven years ago I was struck by how he’d improved my life as a DES Daughter and I, along with thousands of others affected by DES, weren’t aware of his work for us. And further, how do you even count how many lives he saved by getting dangerous drugs off the market?
I had dinner with Sid and his wife Suzanne in Georgetown the summer before the pandemic hit. He was annoyed at how I had voted in a recent DSARM meeting. This was a rare disagreement between us. We almost never spoke about the subjects before DSARM meetings but he often called after to compliment me on the questions I’d asked and the topics I’d raised in the public meetings. When he disagreed or felt I’d missed a point, he’d tell me, but he also kindly brushed it off with the comment, “no one gets everything right.”
In the seven years I knew him, Sidney Wolfe stood and testified at every single Committee panel I sat on except for the past year. I know he testified at many more. The last time I spoke with him was in November 2022, about the drug Makena. As usual, he didn’t need me to fill him in on any of the research. Since ProPublica had been active on the issue of Makena, he checked with the new head of the Health Research Group and called back, getting my voicemail. I saved his message and I just listened to it again. He counseled me that the FDA process would work and I could let this play out. I was worried, Makena is so close to what DES was, getting it off the market had become a personal goal. But he was right, five months later the FDA removed the indication for Makena’s use in pregnancy. And it was time to move onto the next problem drug.
I’ll miss seeing Sid challenging the FDA to do their best work. I’ll miss having him pat me on the back or chastise me for not digging into the research hard enough. We will all be worse off for not having him leading the charge for what he called research-based advocacy.
– Suzanne B. Robotti
