How Decades Of Research Misconduct Stalled An Alzheimer’s Cure

The following is an excerpt from Doctored: Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer’s by Charles Piller.

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Doctored: Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer's

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In December 2021, I fell into one of the biggest and most disturbing stories of my career. A credible whistleblower with strong credentials in dementia research tipped me to a major case of apparent misconduct in his field. He produced convincing evidence that lab studies at the heart of the dominant hypothesis for the cause of Alzheimer’s disease might have been based on bogus data. My investigative story for Science magazine in July 2022 exposed those findings and their far-reaching significance, drawing global media attention. But I didn’t suspect it would begin a yearslong, high-stakes journey into hidden, sordid corners of science and medicine.

Just a couple months later, two giant drug companies announced what many described as one of the most dramatic developments in the history of Alzheimer’s. For decades scientists had struggled fruitlessly to offer hope to millions of patients who suffer the gradual, debilitating decline in their ability to think and remember loved ones, or enjoy self-aware lives. Finally, a major test seemed to prove that a new medication could alter the course of the disease.

That drug, Leqembi, strips away from brain tissues the sticky plaques and other toxic compounds that comprise a substance called “amyloid-beta.” In so doing- said its makers, experts in their pay, and cheerleading journalists—Leqembi definitively validated the “amyloid hypothesis,;” the long-debated notion that Alzheimer’s is caused by the buildup accumulation of amyloid in the brain. If true, its removal would lead to a cure.

Understandable excitement—hope against hope—greeted Leqembi. Alzheimer’s afflicts nearly seven million Americans, about one in every nine over the age of sixty-five, making it the fifth leading cause of death among the elderly. Up to 360,000 adults in the prime of life-including people as young as thirty-suffer from early onset Alzheimer’s. Comparable figures in the United Kingdom, Europe, and the rest of the world have made the leading cause of dementia a global scourge. And dementia totals will more than double by 2050.

In the United States alone, more than eleven million family members care for fathers and mothers and grandparents who have fallen prey to the cruel disease that begins by gradually stealing a person’s mastery of everyday life, then cherished memories, and finally the sense of self that makes each of us human. Alzheimer’s families face incalculable emotional costs—including lost dreams of retirement and pleasures with loving partners. For many, the disease also means financial impoverishment. Family caregivers in the United States provided a staggering $350 billion in care to Alzheimer’s patients in 2023—nearly matching the amount paid for dementia care by all other sources, including Medicare.

Unfortunately, the Leqembi “breakthrough” amounted to just this: Alzheimer’s patients lost their ability to remember, think clearly, and live normal lives only slightly less rapidly than others taking a bogus treatment. The drug offers so modest a benefit that doctors and patients might not perceive any effect whatsoever.

It was the latest example of the exaggeration, hype, and sheer fakery and fraud that has characterized Alzheimer’s research for decades. By then I realized that I could tell the full story of how the hunt to cure the insidious and chilling illness went awry. I had to show why billions of dollars in spending by governments, pharma companies, and philanthropies had done little for desperate patients.

For decades, proponents of the dominant amyloid hypothesis have sidelined, starved for resources, and even bullied rebels behind other promising notions of how to treat Alzheimer’s. If Leqembi and look-alikes with similarly lackluster results hold sway in drug development and dominate mindshare among patients and doctors, a genuine Alzheimer’s cure might become even more remote.

Many patients take a leap of faith in such drugs as a hedge against creeping fear. Big pharma companies, among others, bet their bottom lines on that basic instinct. Alzheimer’s research has offered endless opportunities for advancement and riches to corporate shysters and ruthlessly ambitious scientists who cut corners or engage in brazen deception. I set out to unmask decades of arrogance, greed, fabulism, and error that have emptied research coffers and littered the drug development landscape with failure after failure.

My reporting followed the path of a junior professor who faced great personal risks to challenge his field’s institutional powers. He uncovered hidden and fabricated data instrumental to keeping the amyloid hypothesis supreme at the expense of other possible solutions. As I dug deeper, a scientific under world of deceit and lies rose into view. I gradually saw an opportunity to help reshape how scientists, doctors, and patients understand one of the most terrible human afflictions-and add realistic hope in the process.

The story begins where it must, with a deeply determined patient struggling with dementia. He dared to hope that he could be one of the first people living with Alzheimer’s to find a transformative treatment.