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Fighting for Funds

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Congressman Tom Cole makes Alzheimer’s research a national priority

 

Congressman Tom Cole (R-Okla.), an eight-term member of the U.S. House of Representatives and the Chairman of the House Appropriations Committee’s Subcommittee on Labor, Health and Human Services, Education and Related Agencies, is one of the federal government’s most prominent leaders on Alzheimer’s disease research and healthcare funding. Rep. Cole recently spoke with Fisher Center for Alzheimer’s Research Foundation President and CEO Kent Karosen and Managing Editor Sam Gaines about his family’s history with the disease and our nation’s ongoing search for better treatments and a cure.

 

Time Magazine once called Rep. Tom Cole “one of the sharpest minds in the House.” It’s no surprise, then, that he has spearheaded the House’s appropriations priorities for increased funding for Alzheimer’s disease research. Rep. Cole’s appropriations bill for 2015 included a $300 million increase in Alzheimer’s research funding through the National Institutes of Health (NIH). He has also been vocal in his opposition to President Trump’s proposed budget cuts to the NIH, the largest public funder of scientific research in the U.S. In 2017, Cole and his Senate colleague, Roy Blunt (R-Mo.), led the fight against Trump’s proposed $1.2 billion cut to the NIH, instead increasing the agency’s budget by $2 billion, or 6 percent of the agency’s total budget, for the second year in a row.

The Cole family

A fifth-generation native of Oklahoma and an enrolled member of the Chickasaw Nation, Cole is one of only two Native Americans currently serving in Congress. Cole’s late father, John, was a career U.S. Air Force master sergeant, serving 20 years and then working an additional two decades as a civilian federal employee at Tinker Air Force Base in Midwest City, Okla. Cole’s late mother, Helen, had a distinguished career of her own: She served as a state representative, state senator and mayor of Moore, Okla.

In 1984, Cole and his family learned that his father had Alzheimer’s disease. That experience had a powerful impact on the congressman.

We spoke with the Congressman about his family’s experience with Alzheimer’s and the vitally important subjects of funding for caregiving and continued research into the disease.

Preserving Your Memory: What are some of your fondest memories of your father?

Rep. Tom Cole: He was a great dad. I love to say that everyone should have an NCO (non-commissioned officer) as a father. He was strict and disciplined in a way that a good master sergeant should be. We were OU (Oklahoma University) football fanatics. He took me to my first OU football game, back when Bud Wilkinson was coaching. We were of limited means and couldn’t afford season tickets, but somehow he always managed to hustle a couple of tickets and get us in. I remember one time, in 1962, we were playing Missouri for the Big Eight Championship, and we didn’t have tickets. We were standing out in the rain. Some guy spotted us and offered us two tickets that were supposed to be for his friends, but they didn’t show. I was 12 years old at the time. My father provided wonderful support. He did everything he knew to help his kids and helped us secure everything we needed as a family.

PYM: When did your family discover that your father had Alzheimer’s disease?

TC: We knew something was wrong in 1982. He had retired, and the last year he was working—he was a skilled mechanic—something was just not right. By 1984 we had a diagnosis. He was able to stay at home at first. Over time, though, it was increasingly difficult for my mom to provide care as his condition deteriorated.

The saddest day of my life was when my brother and I did a family intervention and told my mom, you just can’t do this any longer. We took him to a veterans’ center in Ardmore, Okla., about 100 miles away. He was in two different veterans’ center for the last 12 years. He didn’t know any of us the last 11 years of his life.

PYM: How involved were you and your family in his care?

TC: We were extremely involved. My mom was the sole caregiver, and the family was supportive. She was a state senator at the time and gave that up to be his caregiver. Later, when he was institutionalized, she ran again and won. Once he was institutionalized, we were down there all the time. Friends, family and neighbors all helped—an informal support system we didn’t know we had until we needed it.

PYM: What words of wisdom would you offer to someone who has just learned that a loved one has Alzheimer’s?

TC: First of all, we now understand a lot more about it. Support networks are there, so don’t be shy about asking for help. And know that your government is trying to do something about this, which is a national priority. We’ve dramatically increased funding over the past three years. Help is on the way.

Tom Cole and his mother, Helen.

I remember the first time we proposed a major increase in funding in 2015, and we got a letter from a lady in Texas whose husband had just been diagnosed with Alzheimer’s. She said she felt so alone. It was precisely the same position my mother found herself in, also after roughly 40 years of marriage.

There is no easy answer, but there is support and we are focused on this and are putting more money toward it. We had 28% more
proposals for NIH research into Alzheimer’s last year. A sustained effort over time will make a big difference as we continue this initiative to find a cure.

The human dimensions alone are enough to justify the investment. Most people are startled to learn that we spend $259 billion a year in Medicaid, and that will rise to more than $1 trillion by 2050, just given the increasing longevity of the population. It will bankrupt the country if we don’t get ahead of it. We must make this investment—it’s the right thing to do for the people of our nation.

“ I really credit the people who’ve been involved in this field a long time—there’s so much awareness around the disease at this point. Members on both sides of the aisle want to be involved in this. They both see the wisdom of the research and understand the human toll of the disease.”
—U.S. Rep. Tom Cole

PYM: You are a leading voice in Congress for Alzheimer’s research funding. How are we doing as a nation on that front at this point?

TC: We’re actually doing quite well. I really credit the people who’ve been involved in this field a long time—there’s so much awareness around the disease at this point. Members on both sides of the aisle want to be involved in this. They both see the wisdom of the research and understand the human toll of the disease. We just needed to stay focused, and I can’t say enough about Sen. Roy Blunt, my counterpart, who’s been a leader on this front as well. Fate put us in the same position at exactly the same time. We both understood the importance of engaging NIH in this fight.

PYM: Our nation’s population is aging rapidly. As this trend continues, how will it impact the urgency of finding more effective treatments and maybe even a cure?

TC: It absolutely exacerbates every problem we have. We didn’t really see an expanded life expectancy until the last generation or so. But we’re living longer now, so Alzheimer’s disease is a growing problem. This is one issue where if we don’t get ahead of it, it will destroy our federal budget. Hopefully we’ll find a cure, but even slowing the progression of the disease would be a major step.

Alzheimer’s disease is the only major disease we don’t have a cure for. Even with cancer, there is tremendous hope for survival. About 65% of cancer patients overcome the disease. We need the same sort of impact here, in our fight against Alzheimer’s. This disease is even more expensive to treat and provide care for than cancer is.

PYM: What more do we need to be doing as a nation to find better treatments and, hopefully, a cure?

TC: I think we need to keep at it. What always worries me about these things is that you can have a one-hit wonder—one good year in appropriations, and then the focus is gone. We need a sustained investment at this time and on into the future. So, the process of educating members of Congress about the importance of that is very important.

There are tremendous things happening in private philanthropy in this area, but we need to maintain and advance our federal support, as well. We’ve reached critical mass between private research and public investment, for the benefit of our people and all humanity, really. This is a major global problem, particularly as life spans continue to increase. We’ve got the resources and intellectual capacity. America can be a global leader here, so we can make a big difference in our country and around the world.

We need to stay at it and find better ways to treat patients, and, of course, a cure for all who suffer from this disease.

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