Is the desperation of patients with incurable diseases being exploited?

In a linked analysis article (doi:10.1136/bmj-2023-075000),1 Fernandez Lynch and Largent argue that regulators should balance the wishes of current patients for access to potentially innovative therapies with those of future patients who want to be certain of the safety and efficacy of medical interventions. Their proposals inform debates about which medicines should receive market approval. But they discount that commercial interests exploit the willingness of patients with incurable conditions to explore experimental treatments and underplay drawbacks that will affect the certainty and future of interventions.Our experiences since one of us (James Flynn) was diagnosed with amyotrophic lateral sclerosis (ALS) show how people with life threatening and incurable illnesses, out of desperation, may be more willing to experiment with interventions with unknown efficacy and serious downsides. ALS is a progressive, neurodegenerative disease that has no known cure and an average life expectancy from diagnosis of two to five years.2 Hoping to…
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