10 years after the national Alzheimer's report: progress?

Navigating the chaos that reigned in our garage this winter, I came across a box filled with items from my 40-year-old journalist in Washington. The cover of one of those reports from the "Blue Ribbon" commission, which picks up dust in the nation's capital, was staring at me. But this one, A National Alzheimer's Strategic Plan: The Alzheimer's ReportStudy Group. published 10 years ago today, was different. This has not only triggered important policy changes; it was very personal.

My father and mother have succumbed to Alzheimer's disease, the most feared disease among people over 65 and the second (after cancer) of all Americans. Of course, my sister and I, like millions of other members of an Alzheimer's family, are aware of the possible genetic links to dementia and the possibility of effective treatments and curative treatment.

A new look at the Alzheimer's report 10 years later

In reviewing the report of the Alzheimer's Study Group (ASG), I wondered how much progress had been made since 2009. I therefore examined the efforts of the drug manufacturers and the government since then, and have spoken to Alzheimer 's disease experts, including two members of the report' s expert group, to hear their ideas.

Ten years after the publication of the report, treatments and curative treatment of Alzheimer's disease are still far away, in part because of two words: "miserably underfunded". This is how the report describes the federal investment in research on Alzheimer's disease, which already had the third most expensive disease in the nation. At the time, it cost the federal government $ 100 billion a year.

And the report offered this alarming prediction: "If we fail to … upset current trends … over the next 40 years, the costs of Medicare and Medicaid for Alzheimer's disease are expected to total $ 20 trillion in constant dollars, to reach more than $ 1 trillion a year. year to 2050. "

With the aging of the baby boomers – the oldest now 73 and the youngest, 55 – the number of Alzheimer's cases is expected to increase from 5.3 million in 2009 to 14 million in 2050, threatening to put the bankrupt health system. (When writing the ASG report, the forecast for 2050 for Americans with Alzheimer's was less than about 13.2 million.)

Put all the chips on a theory

Robert Egge, then executive director of the SGS and now chief of public policy at the Alzheimer's Association, explains that the lack of funding has forced researchers to "put all their strengths" ahead of the best-understood theory of Alzheimer's disease. Alzheimer. This theory: an accumulation of beta-amyloid plaques and tangles that are the main changes of the brain in the disease.

But again and again, all attempts to convert research into effective drugs to fight or prevent Alzheimer's disease have not succeeded.

"All the pharmaceutical failures we see are due to these bets," said Egge.

A huge setback came last week. Drug Manufacturers Biogen and Eisai have announced that they will terminate two end-stage clinical trials of aducanumabet, their drug for Alzheimer's disease. The companies concluded that what could be a promising treatment to slow the progression of Alzheimer's disease would not help patients.

Doubt about a state-of-the-art theory of Alzheimer's

Their decision casts further doubt on the theory that Alzheimer's disease is caused by the accumulation of beta-amyloid, wiping out the hopes of many people, including the Alzheimer's Association, who has expressed "disappointment" but has tried to give the best face possible.

"Much of the knowledge we have gained about potential new treatments and how to properly conduct clinical trials in people with Alzheimer's disease or at risk for contracting Alzheimer's disease are from clinical trials that have not achieved their goals, "said the group in a statement.

Last year, drug maker Pfizer abandoned its research to discover new drugs for the treatment of Alzheimer's and Parkinson's and laid off 300 employees. But other companies continue to work on treatments targeting targets other than beta-amyloid, such as tau protein, which is also present in the brains of patients with Alzheimer's disease.

Ironically, the very day that the frightening announcement of the failure of clinical trials on aducanumabet was made, there was an optimistic note about Alzheimer's in a Pew Research survey. More than half of Americans surveyed expect a cure for Alzheimer's disease by 2050.

Look for lifestyle changes to help prevent dementia

Over the last decade, as scientists worked on a breakthrough Alzheimer's drug, there has been a new emphasis on lifestyle changes as a way to help prevent dementia. They include: avoiding brain damage, sleeping and sleeping in a formal education program at any age.

With this in mind, Senator Susan Collins (R-Maine), Co-Chair of the Alzheimer's Disease Task Force and Chair of the Senate Committee on Aging, presented the bipartite bill "Building Our Health Care Infrastructure". the largest (bold) dementia "by the end of 2018. It will establish centers of excellence to educate the public about Alzheimer's disease, cognitive decline and brain health. The law also requires the federal Centers for Disease Control to allocate funds to local health departments to help Americans with Alzheimer's disease and their caregivers.

"It's an attempt to analyze Alzheimer's disease from a public health point of view, and not just to look for a pharmaceutical solution," says Collins. "They are both important. However, it is an approach to reduce cognitive decline due to lifestyle factors and to provide more support to families and caregivers.

Build on new theories for new medicines

Scientists have since learned from the ASG report that Alzheimer's began 15 to 20 years before the onset of symptoms, which may require a different strategy than that described by the panel.

And with the research budgets of the National Institutes of Health (NIH) for quintuplement Alzheimer's disease and related dementia from 2011 to 2019 (bar graph), scientists now have enough chips to bet on a crowd of theories increasing the chances of this miracle drug. Funding NIH research for Alzheimer's research and related dementia in 2019: $ 2.3 billion.

The ASG report was published with this warning: "Alzheimer's disease poses a serious and growing challenge to our nation. We must act now. And new statistics from the National Center for Health Statistics only confirm this alarm: the death rate from dementia in the United States has more than doubled in the last decade.

What worries and encourages Alzheimer's experts

So, 10 years later, here's what some of those who have been involved in the Alzheimer's battle, including the ASG committee members, tell me what worries them the most and that they believe that there is a glimmer of hope:

Former Nebraska Democratic Senator Bob Kerrey, Co-Chair of Alzheimer's"s Study Group and now Executive Chairman of the Minerva Institute:

"The disease does not get the respect it deserves. I think it would be a good thing not to go into the report: add a dollar a month to the Medicare Part B premiums and spend all that on Alzheimer's research. That would have meant hundreds of millions of dollars. It was perceived as a tax increase, so we could not do it.

The challenge is that, given the tsunami of retirees – ten thousand every day, sixty-five years – once this cohort reaches eighty years, the number of cases and costs could increase sharply.

But I hope the enthusiasm I see among Rockefeller University researchers, who are trying to find an answer to the cause of this disease. "

Dr. David Satcher, a member of the Alzheimer's Disease Study Group, former general surgeon to Presidents Clinton and Bush, hasFounding Director of the Satcher Health Leadership Institute at the Morehouse School of Medicine. His mother-in-law died of Alzheimer's"s and his wife are in a hospice after being diagnosed with Alzheimer'sS 18 years ago:

"I fear that few people will know that three hundred thousand children go to the emergency department every year and that they are diagnosed with a concussion. We must understand that there is a link between concussions and dementia, not just in professional football but in children. I do not think we pay enough attention to brain health, especially dementia and Alzheimer's disease.

I hope that attitudes change. When NFL players are excluded from the game for intentional targeting, it is a serious matter. But health care providers must test their patients for memory loss. "

Senator Susan Collins, who represents the state with the oldest median population and therefore a high incidence of Alzheimer's"s disease. Collins, a former influencer of Next Avenue in Aging, lost her father to this disease a year ago:

"If we do not have a breakthrough, I think the trajectory of this disease is frightening. What this is going to do with the Medicare and Medicaid programs is also devastating. Even if we do not move for humanitarian reasons, the Congress should be very concerned about the financial implications.

"What gives me the most hope is the change in the public's attitude. Ten years ago, people were still reluctant to talk about Alzheimer's disease, as if it were shameful. It reminds me that people would not say "cancer" when I was growing up. They call it the "word C". [Public discussions of Alzheimer’s is] a huge advance, because when people start talking about the disease, it helps us to claim more money, which, in my opinion, is essential to a breakthrough. "

Dr. Maria Carrillo, Scientific Manager for Alzheimer's"s Association and former assistant professor at Rush University Medical Center:

"From a scientific point of view, my biggest concern is that, across the country, underrepresented populations are not studied. There are simply not enough people of color in tertiary memory clinics. They stay with their primary care physician … Not only do they not see a specialist, but they are not referred to clinical studies so that we can better understand what is happening in the disease.

"However, there is a good side of things and a huge opportunity. For Blacks and Latin Americans who have more cardiovascular risk factors, even with a diagnosis of Alzheimer's, you can start to tackle the lifestyle [habits] with high blood pressure, cholesterol and a healthy diet, so you may be able to delay or even prevent much of this dementia. It's exciting and gives me great hope. "

(To find out more about Alzheimer's disease and to find resources that can help you and your family, contact the 24/7 Alzheimer Association Helpline: 800-272- 3900.)

By Richard Harris

Richard Harris is editorial producer of the television magazine IN FACT with Soledad O 'Brien. He was director of NPR's afternoon programming in 2009, when members of the Alzheimer's Disease Task Force appeared. Talk about the nation sharing program of imminent threat posed by Alzheimer's disease.@ redsox54

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