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.”