Work to be done in the fight to end Alzheimer’s

By U.S. Sen. Susan Collins
(R-Maine)

When I was back home in Maine recently, I saw an 88-year-old woman taking care of her 90-year-old husband with Alzheimer’s. I also spoke with a woman in her 50s who, with her sisters, is juggling their busy work schedules with the care of their mother who has Alzheimer’s. And I talked to a man trying to cope with his wife’s dementia as well as his own health problems.

As families throughout the country can attest, Alzheimer’s is a devastating disease that exacts a tremendous personal and economic toll on individuals, families, and our health care system.

The Centers for Disease Control lists Alzheimer’s as the sixth leading cause of death in our country. Approximately 5.4 million Americans are living with Alzheimer’s today, including 37,000 in Maine. That number is soaring as our overall population grows older and lives longer. If current trends continue, Alzheimer’s disease could affect as many as 16 million Americans by the year 2050.

In addition to the human suffering it causes, Alzheimer’s is our nation’s costliest disease. The United States spends more than $236 billion per year, including $160 billion in costs to the Medicare and Medicaid programs, caring for people with Alzheimer’s. It is the only one of our nation’s top 10 diseases without an effective means of prevention, treatment, or a cure. If we do nothing, the Alzheimer’s Association forecasts that the disease will cost the United States an astonishing $1.1 trillion by 2050.

Despite these alarming statistics, for too long our efforts to fight this disease lacked coordination and focus. It was not until the bipartisan National Alzheimer’s Project Act I co-authored in 2011 with former Sen. Evan Bayh that a strategic national plan to combat Alzheimer’s was created, and it has since been updated annually. NAPA focuses our efforts to accelerate progress toward better treatments, a means of prevention, and ultimately, a cure. NAPA provides a roadmap to a better future by setting the primary goal of preventing and effectively treating Alzheimer’s by 2025. That legislation created an expert council, which determined that $2 billion per year is needed to achieve that goal.

As a senior member of the Appropriations Committee, I worked to turn the words of that recommendation into action. The spending bill passed last year includes a $2 billion increase for the National Institutes of Health, the largest increase since 2004. That includes a $350 million increase for Alzheimer’s research, the largest in history, bringing the total to $936 million — a more than 50 percent increase and almost halfway to our $2 billion-per-year goal.

I recently chaired a Senate Aging Committee hearing to assess the progress we have made toward the goal of ending Alzheimer’s by 2025. Our panel of expert witnesses described many encouraging steps we have taken in the past five years since NAPA became law to advance both research and support for patients and caregivers, and they offered keen insight intowhat more we must do to achieve our goals by the year 2025.

One of our witnesses was Dr. Ron Petersen, chairman of the advisory council established by NAPA and director of the Mayo Clinic Alzheimer’s Disease Research Center. While the ultimate goal of NAPA is to prevent and effectively treat Alzheimer’s by 2025, Dr. Petersen said the first goal is to delay the onset or slow the progression of the disease. That, he said, is an achievable goal toward which we are making progress. The increased funding for research has dramatically expanded both the number and quality of research projects and clinical trials.

Nonetheless, his statement that Alzheimer’s is the only one of the major chronic diseases — such as cancer, HIV/AIDS, heart disease, and diabetes — with an annual death rate that continues to increase was a sobering reminder that we have much farther to go.

In addition to an update on the status of research, the Committee heard from witnesses on the caregiving side of the equation. Among them was the award-winning actor David Hyde Pierce, who has experienced the heartbreak of Alzheimer’s in his own family. Mr. Pierce has been an effective advocate for Alzheimer’s care for nearly two decades and has served on the advisory council created by NAPA. He said that while the research community is moving forward, similar progress is lacking in our efforts to enhance the quality of care and support for Alzheimer’s patients and their families.

To address this gap, I have introduced bipartisan legislation that would develop a national strategy to recognize and support caregivers. The RAISE Family Caregivers Act has passed unanimously in the Senate and now awaits action in the House of Representatives.

As we tackle Alzheimer’s complexities through scientific research, we must never forget these family caregivers, who are truly heroes. Our caregivers make many personal and financial sacrifices to ensure that their loved ones have the care that they need. It is essential that federal policies support them in this difficult challenge.