I argue that a person who has a disease, or has a relative who has a disease, sometimes has a skin-in-the-game sense of urgency in seeking a cure for the disease. The urgency sometimes energizes them to ignore perverse incentives, and to overcome obstacles and constraints, that slow or block the efforts of academics, pharma firms, or government regulators, to fight the disease. The passages quoted below suggest that Nancy Wexler has a skin-in-the-game urgency to cure Huntington’s disease.
An important side-note to her story is that investigators conducting an RCT to test a possible drug to fight Huntington’s disease, decided to enroll Wexler in their RCT, despite her being older than the upper limit set in their RCT protocol. This illustrates my claim that in the actual messy real-world there are many ways that RCTs, as implemented, deviate from the ideal “gold standard” RCTs that are discussed in the theoretical literature.
(p. D1) At age 80, Nancy Wexler has Huntington’s disease, a dreaded brain disease that destroys a person’s ability to control movements. There is no treatment. There is no cure.
. . .
Nancy is not just any Huntington’s disease patient. For decades, she led a research effort in a remote area of Venezuela that found the gene responsible for Huntington’s. That work yielded a blood test that enable at-risk people to find out if they are destined to get the disease.
. . .
(p. D5) After graduating from Radcliffe College, she was in Europe on Fulbright fellowship when she was called home to learn her mother had the disease.
. . .
When his wife’s slide into the disease could no longer be denied, Milton called both sisters home and sat them down in his bedroom. The 50-50 chance now hung over both of them, too. He gave them some advice they never forgot: Don’t waste your life.
Alice decided to ignore Huntington’s and her own risk. “I didn’t want to have anything to do with it,” she told me. She became a historian.
Nancy had a different reaction. She would make Huntington’s the focus of her life, getting a Ph.D. in clinical psychology from the University of Michigan. Her thesis subject: the experiences of people with Huntington’s, and of those at risk for getting it. She thought of that choice as a way of coping with her situation. She wrote that it was a version of something the American Psychiatric Association called implosion theory — “a technique used in behavior therapy where the client is flooded with experiences believed to be relevant to the client’s fear.”
“I could talk about Huntington’s without seeming selfish and whiny,” she explained. “I could talk about how people felt in the context of helping them.”
. . .
On frequent trips to California, Nancy was also helping her father lead the Huntington Disease Foundation. The group’s gatherings couldn’t be further from the staid scientific meetings that are the main staple of academic life. There were no traditional talks, no slides. Instead, Nancy and her father invited creative scientists — who may or may not have ever thought about Huntington’s before — to brainstorm about ways to find the gene, scrawling their ideas on a whiteboard. The meetings always included a Huntington’s patient, or the family member of a patient, so the scientists could understand what was a stake.
. . .
The search for the gene began in earnest in 1980, focusing on three communities around Lake Maracaibo, Venezuela, that had the greatest prevalence of Huntington’s disease in the world.
. . .
Nancy led the research team, returning to Venezuela regularly for 22 years and collecting more than 4,000 blood samples from Venezuelans. She cared deeply for them, and even helped establish a nursing home for Huntington’s patients.
For the full article, see:
(Note: ellipses added. In the original article, the phrase Don’t waste your life is italicized for emphasis.)
(Note: the online version of the article has the date June 11, 2026, and has the title “The Researcher Who Didn’t Want to Know.”)
