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6

Sorting Through 498,000 Clinical Trials

Bess Stillman on the cruel irrationality of the FDA towards dying patients
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Bess Stillman (email) is a doctor at the Mayo Clinic and writes at Everything Is An Emergency. She is also an excellent storyteller who uses her skills to convey the hectic and at times heart wrenching experiences one faces as an ER doctor. Bess is married to Jake Seliger, who in 2022 was diagnosed with squamous cell carcinoma. She has written a three-part series about the struggles that she and Jake have faced getting him into clinical trials. On the podcast, Bess describes the maddening and cruelly irrational processes that dying patients must go through in order to find access to treatments that might help them. The conversation covers the nightmare of dealing with ClinicalTrials.gov, the requirement that an individual travel across state lines to even know if they are eligible for a trial, and how the government continues to exercise paternalism on the behalf of patients who have no other options other than to take a drug that has not yet been proven to work. Bess also discusses policy ideas she would like to see implemented, and finally shares some stories from her time as an ER doctor.

The themes touched on here will be familiar to those who have read about the “invisible graveyard” that the FDA is responsible for. Yet even listeners who know about the utter lack of interest in patient well being normally shown by federal agencies will find themselves shocked by the degree to which bureaucratic procedures with few plausible benefits govern the lives of sick individuals who want nothing but to get some extra time on this earth and help move science forward. For dealing with the clinical trial system in its current state, Bess is currently trying to figure out ways to assist oncologists and patients in being able to navigate the process at HelpMeFindAClinicalTrial.com. And hopefully by telling her story, she can help inspire much needed reforms to the system.

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