Seth Rogen, the actor, testified before the Senate Committee on Appropriations on Feb. 26, 2014 on what he called “the real ugly truth” about Alzheimer’s disease.
Seth Rogen testifies before a U.S. Senate committee in 2014.
“After forgetting who she and her loved ones were, my mother-in-law, a teacher of 35 years, then forgot how to speak, feed herself, dress herself and go to the bathroom herself, all by the age of 60,” Rogen told the committee.
While grateful for the opportunity to speak before the committee, Rogen tweeted his disappointment later that day:
“Not sure why only two senators were at the hearing. Very symbolic of how the Government views Alzheimer’s. Seems to be a low priority.”
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A year later, things had not changed much. An article in the Jan/Feb 2015 issue of the AARP Bulletin lamented that:
“…Alzheimer’s is an also-ran when it comes to federal funding for research on prevention and treatment. In the intense political competition for federal dollars, other diseases come out far ahead of Alzheimer’s. Washington has committed some $5.4 billion this fiscal year  to cancer research, about $1.2 billion to heart disease and $3 billion to research on HIV/AIDS. Research funding for Alzheimer’s will reach only about $566 million.”
By the end of that year, however, things had changed a great deal.
A week before Christmas, the Alzheimer’s Association made an unprecedented announcement: In the 2016 fiscal year budget, appropriations leaders in the U.S. House and Senate agreed to the largest increase in history for Alzheimer’s research funding — $350 million, bringing total research funding for Alzheimer’s disease to $936 million.
What happened? Why did Alzheimer’s disease become a bigger priority to the federal government in the 22 months between Rogen’s tweet and the Alzheimer’s Association’s triumphant announcement in December 2015?
Credit must go to the lobbying efforts of the Alzheimer’s Association, the advocacy and research group. The organization was aided by a sympathetic Republican Congressman from Oklahoma. An Academy Award-winning actress had a role in raising the profile of Alzheimer’s disease. And years of public relations campaigns, research, educational programs, fund raising, and other strategies by advocacy groups finally showed results.
Yet, the disease’s relentless spread is, arguably, the major reason why Congress ratcheted up its commitment to attacking Alzheimer’s disease.
More than 5.3 million Americans have the disease, according to the Alzheimer’s Association; 5.1 million of them are over age 65. The total number is projected to reach 13.5 million by 2050.
Alzheimer’s disease is the sixth-leading cause of death in the United States. It is the only disease in the top 10 causes of death without a way to prevent, cure or even slow its progression. It affects women more than men. A new study found that African-Americans are 64 percent more likely to develop AD than Caucasians. It is a costly disease. Last year, Alzheimer’s and other forms of dementia cost the nation $226 billion in medical treatment, nursing home facilities, lost wages of family members taking care of their loved ones and other related costs.
No longer is Alzheimer’s the disease that people hear about. As the baby boomer population ages, it is a disease that more and more people are living with, either because they’ve been diagnosed with it, or they are caring for a family member or friend who has it.
Rep. Tom Cole, (R-OK).
Rep. Tom Cole (R-OK) is a case in point.
Cole serves on the powerful House Appropriations Committee, where he is Chairman of the Subcommittee on Labor, Health and Human Services, Education and Related Agencies. The subcommittee funds medical research programs, which makes him important to the Alzheimer’s Association.
Cole acknowledged the organization’s work. “We just adopted the proposal of the Alzheimer’s advocates because we thought it made a lot of sense.” He agrees with the Association that it will ultimately costs less to cure the disease than to treat it, saving the federal government millions of dollars, since half of that $226 billion in annual costs are borne by Medicare.
Cole is no stranger to how lives are affected by serious diseases. His said that his father, John Cole, had Alzheimer’s disease. For the last 12 years of his life, the elder Cole was institutionalized in a veterans’ nursing facility. And for more than 20 years, Cole’s wife, Ellen, has struggled with multiple sclerosis.
“I am cognizant of the fact that you can’t allow the things that have touched you personally to drive your decision making,” Cole said. “Alzheimer’s [research funding], to me, makes a lot of sense just from everything I know about entitlement spending and the baby boomers and the aging of America — the statistics are pretty clear.”
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While the successful pursuit of increased research funding for Alzheimer’s research owes much to the heavy lifting of Cole and the Alzheimer’s Association, events outside Washington had an impact, too.
Almost a year to the day after Rogen’s testimony, Julianne Moore received a best actress Academy Award for her role in “Still Alice.” Moore portrayed a Columbia University linguistics professor with early-onset Alzheimer’s disease. The movie is based on a novel of the same title by Lisa Genova. Both are credited with raising the public awareness of Alzheimer’s.
In her acceptance speech, Moore said, “I’m thrilled actually, that we were able to hopefully shine a light on Alzheimer’s disease. So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is it makes us feel seen, and not alone. And people with Alzheimer’s deserve to be seen so that we can find a cure.”
Rogen, meanwhile, was not deterred by his reception at the Senate committee. He continues working with Hilarity for Charity, a fundraising and public awareness charitable group that he founded in 2012. According to Rogen:
“Hilarity for Charity started as a message to my generation that it’s time to step up and realize that Alzheimer’s is not just an ‘old person’ disease, but something that will greatly affect all of us. Having a family member with Alzheimer’s disease has made me aware of the damage it does not only to the person who has been diagnosed, but to the caregivers, friends and family who surround the person.”
Last year, a couple of presidential candidates made policy statements about Alzheimer’s disease.
When former Arkansas Gov. Mike Huckabee announced his run for the White House last May, tucked into his speech was this: “Real health care reform is going to focus on prevention and cures, rather than costly intervention. Because hope comes from finding cures for cancer, heart disease, diabetes, and Alzheimer’s.”
Huckabee went farther during the CNBC Republican debate in Boulder, CO in October.
“You want to fix Medicare? Focus on the diseases that are costing us the trillions of dollars. Alzheimer’s, diabetes, heart disease and cancer. Eradicate those and you fix Medicare and you’ve fixed America, its economy and you’ve made people’s lives a heck of a lot better.”
Just days after the appropriations bill was approved by Congress in December, Hillary Clinton proposed a $2 billion-a-year investment in Alzheimer’s research, more than double the amount agreed to by Democratic and Republican legislators. Perhaps even more ambitious is Clinton’s call for a cure by 2025.
These are just a few of the reasons why the federal government is putting significantly more dollars into the fight against Alzheimer’s disease.
What matters most is that the pieces of the Alzheimer puzzle are coming together in ways that advocates have been seeking for decades. Americans are more focused than ever before on the hardships of Alzheimer’s disease, and, as Julianne Moore said, they are pushing to “find a cure.”