JAX Researcher and Academy Award-Winning Actress Testify at Senate Aging Committee on Alzheimer’s Disease

Click HERE for a photo of Senator Collins with Maine Alzheimer’s advocates. 

Click HERE for a photo of Senator Collins with Dr. Gareth Howell.

Click HERE for b-roll or Senator Collins meeting Mainers at today's hearing.

Click HERE to read Senator Collins’ opening statement

Click HERE to watch Senator Collins’ opening statement.  Click HERE for high-quality video

Click HERE to watch Senator Collins’ Q&A.  Click HERE for high-quality video

Washington, D. C. – At a Senate Aging Committee hearing today on the human and economic toll of Alzheimer’s disease, hundreds of Alzheimer’s advocates packed the audience, forming a “sea of purple.”  The hearing, titled “Changing the Trajectory of Alzheimer’s: Reducing Risk, Detecting Early Symptoms, and Improving Data,” explored the need to reduce the personal and financial burden on individuals, families, and society through a multi-faceted public health approach that will reduce risk, increase early detection and diagnosis, improve data collection, and better support those living with the disease.  U.S. Senators Susan Collins is the Chairman of the Aging Committee and the founder and co-chair of the Congressional Task Force on Alzheimer’s Disease.

Dr. Gareth Howell, an Associate Professor for The Jackson Laboratory in Bar Harbor, testified about the progress of Alzheimer’s research. Over the past five years, Dr. Howell and three of his colleagues at JAX have established and led a diverse and vibrant Alzheimer’s disease research program that aims to identify genetic factors that drive both susceptibility and resilience to Alzheimer’s, as well as understand modifiable risk factors and comorbidities that contribute to the disease. To identify early stages of Alzheimer’s disease and dementia, Dr. Howell’s lab uses a variety of genetic and genomic approaches to pinpoint genes and proteins that contribute to the pre-symptomatic stages of Alzheimer’s.

The Committee also heard testimony from award-winning actress Marcia Gay Harden, who recently published a memoir, “The Seasons of My Mother: A Memoir of Love, Family, and Flowers.”  The book details her relationship with her mother who suffers from Alzheimer’s and the effect of the disease on her mother and her family.  Ms. Gay Harden currently stars in CBS’s “Code Black,” and she has won an Academy Award for Best Supporting Actress and a Tony Award for Best Actress in a Play during her acting career. 

“There is no medicine yet, no surgery yet to grasp the dangling thread of memory, to rethread the needle and weave it back into her tapestry and connect thoughts to memory and life experience, to allow her to remember her life,” said Ms. Gay Harden of her mother’s disease. “Instead, as the patient and family wait impatiently, more threads unravel, more dangling thoughts, the tapestry of her life slowly disintegrates, the picture is blurred and memory is lost.”

Ms. Gay Harden explained that victims and families share her frustrations, and she praised the recent introduction of the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act to help improve our nation’s response to Alzheimer’s.  This bipartisan legislation, authored by Senator Collins and cosponsored by 35 bipartisan Senators, including Senator Casey, would create the public health infrastructure we need to combat Alzheimer’s and preserve brain health.

“Alzheimer’s is not a normal part of aging,” said Senator Collins.  “It is a public health issue with a course that we can change.  There are steps that we can take today to help prevent cognitive decline and improve the lives of those living with Alzheimer’s and their caregivers.  This public health approach is not only empowering; it is the key to saving lives.”

The BOLD Alzheimer’s Act would establish Centers of Excellence in Public Health Practice dedicated to promoting Alzheimer’s disease management and caregiving interventions as well as educating the public on Alzheimer’s disease and brain health.  In addition, it would spread the opportunity for communities across America to create the capacity to combat Alzheimer’s.  The legislation would also help public health departments across the country take key steps including education, early diagnosis, risk reduction, care management, and caregiver support.  Finally, BOLD would direct CDC to expand its data collection of cognitive decline, caregiving, and health disparities. 

Alzheimer’s disease is the most common form of dementia, and the risk increases with age.  The growing prevalence of Alzheimer’s is likely to continue in the United States for decades to come. While Alzheimer’s is most common in adults over the age of 65, a growing number of adults younger than 65 are being diagnosed. An estimated 5.7 million Americans are living with Alzheimer’s, costing our nation an astonishing $277 billion a year, including $186 billion in costs to Medicare and Medicaid.  If we continue along this trajectory, Alzheimer’s is projected to claim the minds of nearly 14 million seniors, and surpass $1 trillion in costs by 2050.

Additional Witness Testimony

Lisa C. McGuire PhD, Alzheimer’s Disease and Healthy Aging Program, Centers for Disease Control and Prevention. (Atlanta, GA): Dr. McGuire spoke of the work at CDC creating initiatives and promoting cognitive health to help meet the needs of caregivers at the national, state, and local levels.  Moving forward, the CDC will release another road map later in 2018 that will propose 25 specific actions state and local public health agencies can take.

Teresa Osborne, Secretary, Pennsylvania Department of Aging. (Harrisburg, PA): Secretary Osborne testified to the Committee about Pennsylvania’s current infrastructure aligning with the goals of the BOLD Act.  This includes a state plan on aging and Alzheimer’s disease, a state planning committee, Alzheimer’s disease research centers, partnerships with the Alzheimer’s Association, and a state plan task force.

Cheryll Woods-Flowers, Family Caregiver. (Mount Pleasant, SC): Woods-Flowers is the daughter of the late Richard Allen Novak Sr., who passed away from Alzheimer’s disease in February of 2018. For nearly 16 years, Woods-Flowers, with the help of her siblings, served as their father’s caregiver, conservator, and guardians as he battled his disease. Woods-Flowers promised her dad that she would be his advocate and voice as long as she was able to, and hopes that a cure will be found so that her children and grandchildren will not have to worry about the disease.  She asked Congress to continue to make Alzheimer’s research a priority and pass the BOLD Infrastructure for Alzheimer’s Act to help other families be diagnosed early.

Click HERE to read the witnesses’ full testimonies.