Wow! How? Gleevec

When Norman Scherzer’s wife, Anita, was diagnosed with a rare form of cancer in 1994, he found that the most up-to-date information was being traded among patients who were connecting via email. When a new test, a new drug, and a new clinical trial were all developed at the same time, Scherzer helped organize the Life Raft Group, a community focused on this recently identified cancer: Gastrointestinal Stromal Tumor (GIST).

Patients enrolled in a small clinical trial with sites in Boston, Philadelphia, and Portland, Oregon. Thanks to the Life Raft Group, they kept in touch with each other and with patients who were not part of the trial. The whole community knew that most of the trial participants were doing extremely well on the new drug, called STI571, reporting back that their tumors were stabilizing or even shrinking.

Brian J. Druker, MD, one of the scientists developing the drug, said that he started to see the effect of the internet on people’s lives as they read online that “once-dying patients were getting out of bed, dancing, going hiking, doing yoga.” Novartis was not sure that they should invest in a cure for such a rare disease, but patients organized a petition that reached Daniel Vasella, MD, then the CEO, and a Phase II trial was approved.

The Life Raft Group collected data on the drug’s side effects and crowdsourced ways to minimize them more effectively than the standard trial instructions suggested. As Networkers and Solvers, patients contributed to the science that saved their own lives.

Fast-forward to today: Gleevec transformed not only these patients’ lives, but cancer treatment more broadly. And if it was not for patients and caregivers pooling information and demanding to be heard, the drug may have died in obscurity. As Dr. Vasella wrote in a Life Raft Group newsletter in 2001: “There is real power in the internet as a source of information, but especially as a way to connect with each other, to share experiences, knowledge and help each other. The internet makes all this possible.”

This is just one of the many examples of patient-led innovation I collected, but was not able to include, in my book, Rebel Health (set to be released on Feb. 13, 2024). If you are curious to learn more, check out the Life Raft Group and read Magic Cancer Bullet: How a Tiny Orange Pill is Rewriting Medical History, by Daniel Vasella, MD, and Robert Slater.