On April 2, 2019, the Senate Committee on Aging held a hearing to look at innovations being made in Alzheimer’s research and care models. In a shocking display of bipartisanship, Committee members were overwhelmingly supportive of increased efforts to find viable treatments and continue to explore the impact and progression of the disease, as well as reauthorization of the Older Americans Act. Senators also advocated to expand the Older Americans Act resources to include patients with Alzheimer’s who are under the age of 65 and focused on what more could be done to explore the impact of Alzheimer’s on special and underserved populations.
Witnesses
Witnesses included Mary Dysart Hartt, a family caregiver to her husband Michael Hartt; Clay Jacobs, the Executive Director of the Greater Pennsylvania Area Chapter of the Alzheimer’s Association; Dr. Sharon Fekrat, a Professor of Ophthalmology and Surgery at the Duke School of Medicine; and Dr. Richard Hodes, the Director of the National Institute on Aging at the National Institutes of Health.
Ms. Hartt discussed her experience as a caregiver, including that she retired early and sold the farm she and her husband had owned to simplify their lives so she could take care of Mr. Hartt on a full-time basis. She highlighted the importance of remaining optimistic and focusing on the things she and her husband can still do, rather than dwelling on what they are no longer able to do.
Mr. Jacobs discussed his work and the work of his Association to increase access to educational programs and support services, and reaching out to underserved communities.
Dr. Fekrat discussed a recently-published study of hers which found that loss of blood vessels in the retina could be a signal of Alzheimer’s disease before symptoms set in. In response, she is now working to develop a noninvasive eye scan for Alzheimer’s disease.
Dr. Hodes’ testimony focused on the science behind Alzheimer’s, including genetics and pathology, as well as new molecular targets, biomarkers, and partnerships with industry to accelerate therapies. He also provided insights on new research in caregiving and care planning to better support individuals and families grappling with Alzheimer’s.
Discussion
Special Populations and the Underserved
One topic discussed, particularly by Senator Bob Casey, was how the special populations and underserved can be better served by the community at large when it comes to Alzheimer’s support. Mr. Jacobs discussed some of the initiatives his Association started to target underserved populations in Pennsylvania, including partnering with community leaders (i.e., the Mexican consulate and faith cetners) to build a network of specialized community health workers. He also stressed the importance of clinical trial participation so more can be learned about the disease and that support groups and community education events can work to increase underserved population enrollment in clinical trials.
When it comes to younger patients with early onset Alzheimer’s, Senator Casey (and Senator Susan Collins) advocated for the expansion of the Older Americans Act to include those younger patients, to provide them with resources available under the Act. Dr. Hodes referenced several longitudinal studies with respect to Alzheimer’s and younger patients, as well as Alzheimer’s and patients with Down Syndrome, noting that efforts to better understand special populations were being addressed and expanded.
Caregiving
Ms. Hartt spoke to the difficulty in obtaining an accurate Alzheimer’s diagnosis, which is necessary for the family to understand their new reality and make a care plan. Senator Jacky Rosen noted her belief that coordinated care is crucial to treating Alzheimer’s, to which Dr. Hodes mentioned current research on the issue, including research to determine the best combination of medical professionals, which may not be the same team for all populations.
Federal Funding and Support
Senator Mike Braun asked if federal funding for Alzheimer’s should be more “aggressive,” to which Dr. Hodes noted that the NIA and NIH each closely examine research and efforts annually before establishing milestones they hope to reach. The budget is then drafted based on the needs of the Alzheimer’s community and estimation of milestones. While he did not comment one way or the other on whether federal funding needed to be more aggressive, Dr. Hodes did note that in recent years, they had been fortunate to have their budget estimates closely matched by appropriations, which is helpful to the community.
In further discussing the federal budget, and in response to questioning on innovative research from Senator Collins, Dr. Hodes explained that the expansion in federal Alzheimer’s funding has allowed the NIH to fund “out of the box” research, which has allowed them to look at new areas of the disease. This includes research targeting gene expressions and changes associated with viral expressions, as well as projects targeting cellular senescence as patients age. Last year alone, the government was able to fund 300 new scientists to be brought into the Alzheimer’s field.
Conclusion
While no definitive answers were found in this hearing, it is comforting to know that Congress can come together in a bipartisan fashion for the country. Special attention should be paid to appropriations this year to see if the testimony elicited from this hearing is paid any mind by the appropriate committees.