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When Elias Zerhouni took over as director of the National Institutes of Health in 2002, the only way doctors could know for certain whether a dementia patient had Alzheimer’s disease was to perform an autopsy.
A few years later, new technologies that could deliver a definitive diagnosis revealed an embarrassing truth: many of the ongoing clinical trials for Alzheimer’s treatments included a significant number of subjects who had been misdiagnosed. “We didn’t know who had the disease and who didn’t have it,” Zerhouni recalls.
It fell to Zerhouni and his colleagues at NIH to fashion a research program that could exploit the power of the new diagnostic technologies—which now include imaging, biomarker tests, and digital cognitive tests, among others—to learn about what has turned about to be a hugely complex disease.
Since leaving NIH in 2008, Zerhouni has carried on that work in various roles—as head of research at Sanofi from 2011 to 2018 and, currently, as a founding board member of the Davos Alzheimer’s Collaborative (DAC). He is helping DAC assemble a cohort of Alzheimer’s patients that reflect the world’s genetic, environmental, social, and economic diversity, which he believes is crucial to understanding and treating the disease. DAC’s Global Cohorts program has so far engaged 26 different countries, with the goal of drawing up to one million people from rich and poor nations alike in North America, South America, Africa, Europe, Asia, and the Middle East.
Expanding research to include a diverse cohort is essential to treating Alzheimer’s disease, he believes. Still, new drugs that can slow the progress of Alzheimer’s, despite their limitations, are a turning point, and bode well for the future. “Progress in medicine tends to occur like a swarm around a fortress,” he says. “When there is a crack in one place, you have a lot of people going through that crack, not knowing if it’s a dead end or if it’s the beginning of redemption.”
Scientific American Custom Media talked with Zerhouni about the last two decades of Alzheimer’s research and his vision for what needs to happen going forward.
SCIENTIFIC AMERICAN CUSTOM MEDIA:
You’ve had a bird’s-eye view of many different human diseases. How is Alzheimer’s unique?ZERHOUNI: A perfect life is: you are born, you’re healthy, you remain healthy, and you die.
However, that’s not what you see. What you see is that you have a healthy beginning after childhood illnesses, you’re pretty healthy until about 50, when there are some cancers. For many people who live longer and remain physically healthy, cognitive impairment because of neuronal degeneration leads to a more profound loss of quality of life.
Alzheimer’s is a slow pandemic. It’s growing along with the prevalence of obesity and diabetes and with aging populations almost worldwide. It has a huge economic impact—a permanent impact, because you have a population of patients that could have been healthy and self-sufficient but no longer are.
We found that if you delayed the onset of Alzheimer’s disease by five years, it would reduce its burden on society by 50 percent. We also found that the mortality of caregivers—the wife who takes care of the husband and vice versa—is extremely high.
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Oboh Moses
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