I’m going to close with examples of some leading indicators – beacons of change that address some of these roadblocks and opportunities.
Beacon #1: Patient leaders.
Catherine Calhoun, mother of Billy, a sweet 9-year-old boy who happens to have McCune-Albright syndrome, which among other things, causes severe bone pain. They live in Louisiana but Catherine has researched and networked her way to getting Billy cared for at the best clinical centers in the country, including here at the NIH.
Catherine is also a leader of a social convoy of which she describes as “whipass patient advocates.” She sends so many patients to Billy’s bone doctor and endocrinologist that these doctors refer to the appointments as “consults for Dr. Calhoun.” She’s now working on a bioethics project and recently was in a discussion group with clinicians who talked about how cutting-edge, off-label use of medications are discreetly shared among colleagues at conferences and in social settings. But what about clinicians who aren’t privy to those conversations? Catherine spoke up: “You hope the parents find a big-mouth, trouble-making mama like me who will give them a list of the possible medications and the whys and hows and whos.”
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