The Despair of Persons Living With Alzheimer’s Disease

Posted on August 9, 2021

by Jason Karlawish

On the morning of June 7th, 2021, the U.S. Food and Drug Administration (FDA) approved Biogen’s drug aducanumab (marketed as Aduhelm) for the treatment of Alzheimer’s disease. Alzheimer’s Association President Harry Johns called this decision “historic.” For the nation’s leading Alzheimer’s patient advocacy organization, FDA approval of a drug that targets a pathology thought to cause the disease was a triumph. 

Hilda Pridgeon with Jerome H. Stone, founding president of the national Alzheimer’s Association.
Used with permission from the Alzheimer’s Association. 

“While certainly not a cure, this is the first-ever FDA-approved treatment for the underlying biology of Alzheimer’s, not just the symptoms,” Johns said in a statement. Years of groundwork, including support for research and months of vigorous advocacy for Biogen’s drug, had succeeded. 

Four weeks later, three FDA advisory committee members resigned to protest the approval, the head of the FDA asked the Office of Inspector General to investigate whether conflicts of interest had unduly influenced the FDA’s decision, several congressional committees were planning hearings to do the same, and insurers (including Medicare) expressed grave concerns over whether the drug’s questionable benefits and notable risks were worth the manufacturer’s $60,000 annual per-patient cost. 

The Association’s celebration was collapsing into an imbroglio.

As these dizzying events unfolded, I wasn’t surprised. I ruefully concluded how, yet again, persons living with Alzheimer’s disease and their caregivers were caught up in a vortex of cultural and political forces that have turned their lives into a crisis. 

In my book, The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It, I set out to make sense of why this disease became a crisis and to chart a way forward. 

The story begins in early 20th century Germany. There, a cadre of collegial and collaborative German neuropathologists and psychiatrists, Alois Alzheimer being one, began to upend common understandings about the causes of dementia, especially dementia in older adults. They were questioning the dogma that older adults with dementia were suffering not from a disease, but from extreme aging. Instead, perhaps, the same diseases that caused dementia in younger adults caused it in the elderly. But then this revolutionary research came to a grinding halt. 

Why? 

Culture and politics intruded. Some two decades of crushing political and social instability, chaos, and terror sandwiched between two devastating world wars meant these German physicians’ work ground to a halt. 

The result was that even as late as the 1990s, medicine didn’t care much about persons with dementia. I was taught that the millions of older adults with dementia were suffering not from a disease but instead from “senile dementia” caused by extreme aging. There was little we could do for these persons save for palliating their most extreme symptoms of agitation and confusion. 

Society didn’t care as well, and so families were left to figure things out on their own. 

By 1980, seven angry families said enough. They formed the Alzheimer’s Association, modeled after a self-help group, the distinctly American approach to solving a problem society either ignores or just doesn’t seem to care about. They set out to make America care about Alzheimer’s disease. 

Hilda Pridgeon.
Used with permission from the Alzheimer’s Association. 

Among their leaders was Hilda Pridgeon. Caregiver for her husband, Al, she knew how hard it was to find care, let alone to pay for it. At a 1991 congressional hearing, she explained the financial burden impoverishing all but the wealthiest American families. “People are afraid. I’m afraid. They are afraid of what will happen to them if they get this disease. They are even more afraid of how their families will cope.” She urged Congress to pass legislation to provide social insurance for patients and their families who need long-term care.

Hilda Pridgeon and her colleagues never succeeded in this mission. 

Why? 

Again, as in Germany, culture and politics got in their way. This time it was the Reagan Revolution. By the end of the 20th century, the Republican Party had made the political climate hostile to any expansion of social programs, to any increases in taxes to pay for them. 

Which takes me back to June 7th, 2021. In the hours after the FDA approval of aducanumab, as I was talking with one and another journalist explaining why the FDA decision was a grand mistake, that the agency should not have approved the drug, that the evidence is simply incomplete, I wondered: Why did the Association urge the FDA to rush this controversial drug into practice? Why did the FDA listen? 

The answer is persons living with dementia and their caregivers feel left behind. Since the early 20th century, medicine and society have persistently neglected them. No wonder advocates pushed the FDA to approve a drug that the agency agrees might not benefit patients and needs more study. Patients have a treatment, and the annual per-patient price of $60,000 means money will flow into memory centers to support the services and supports patients and caregivers desperately need. Finally, culture and politics – especially FDA and big pharma – are with them. 

In my book, I argue we need to break the despair that has led to the absurdity of embracing a pharmaceutical stimulus package for care. We need a change of mind and approach to Alzheimer’s disease and all the other diseases that cause dementia. We need effective treatments, but we’re not going to drug our way out of this vast problem. The problem of Alzheimer’s disease is a humanitarian problem. Science, culture, and politics ought to be united so that we can live as well as we can with dementia. 

For the rest of August, get your eBook copy of The Problem of Alzheimer’s for just $2.99!

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Chloe Elmer Photography

Physician and writer Jason Karlawish is a professor at the University of Pennsylvania, co-director of the Penn Memory Center, and author of The Problem of Alzheimer’s Disease: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. To learn more about his research and writing, visit www.jasonkarlawish.com

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