If it were any other disease, outraged patients and their families would be writing their legislators and demonstrating in front of drug makers’ headquarters. But Alzheimer’s is no ordinary disease, so the latest revelation that very few experimental drugs are being tested to see whether they might help people with moderate, let alone severe, dementia passed this week without so much as an indignant press release from advocacy groups or other Alzheimer’s organizations.

Patients with dementia “cannot advocate for themselves,” said Dr. Sam Gandy, a neurologist and Alzheimer’s researcher at the Icahn School of Medicine at Mount Sinai. “Caregivers are too exhausted to be advocates. This shifts the advocacy burden to either young people, who still think of themselves as invincible, or midlife people, whose lives are already overstuffed with children and aging parents, many of whom are in no hurry to add advocacy roles.”

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  • Can someone more knowledgable please explain the financial incentives for looking at early-onset AD in younger people? Suppose you start giving a drug to a group of people in their mid-50s with some markers of AD but who are asymptomatic people. Even if left untreated the cognitive decline would not start for years. So clinical trials demonstrating that the drug is effective would need to be extraordinarily long, and, even if successful, by the time went on the market there’d be very little if any patent term left. How is this supposed to work?

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