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National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, October 2019

Public Comments on Advisory Council Meeting, October 2019

List of Comments

Comments and questions, or alerts to broken links, should be sent to

PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.


S. DeSanti  |  10-15-2019

Thank you for the opportunity to speak about the innovations in the diagnostic pathway of Alzheimer’s disease and the steps that the Centers for Medicare & Medicaid Services (CMS) is taking to provide patients, and their physicians, with new potential coverage of imaging techniques to detect the earliest stages of the disease.

Alzheimer’s disease is the most common form of dementia and the sixth leading cause of death in the United States,[1] and companies, like Life Molecular Imaging, are committed to finding effective diagnostic pathways.

Life Molecular Imaging has received FDA approval for Neuraceq™, a diagnostic radiopharmaceutical indicated for Positron Emission Tomography (PET) imaging of the brain to estimate beta-amyloid neuritic plaque density in adult patients with cognitive impairment who are being evaluated for Alzheimer’s disease and other causes of cognitive decline.[2]

Together with other researchers, physicians and family members, we see the future opportunity to help patients and their families and provide them with more hope.

In 2016, CMS approved a coverage project supported by the Alzheimer’s Association and the American College of Radiology, known as IDEAS -- the Imaging Dementia -- Evidence for Amyloid Scanning study. This study included more than 18,000 Medicare beneficiaries over 22 months in more than 600 primarily hospital sites across the country. The first phase of the study has provided valuable evidence that beta amyloid PET imaging can change medical management in 60.2% of mild cognitive impairment patients and 63.5% of dementia patients of uncertain etiology.[3] Diagnosis changed in 35.6% of patients including an increase in diagnostic confidence and a decrease in utilization of alternative diagnostics.[4]

A second study, known as New IDEAS, which will likely require 7,000 new patients, is intended to seek more evidence from African American and Hispanic patients. As cited in a policy recommended report titled “The Costs of Alzheimer’s and Other Dementia for African Americans”, “[o]lder African Americans are two to three times more likely to have [Alzheimer’s disease] compared to non-Hispanic whites. More than 20% of Americans with [Alzheimer’s disease] are African Americans.”[5]

We encourage the Advisory Council to support the effort to obtain coverage for all Medicare beneficiaries when their physician believes that the patient has early evidence of Alzheimer’s disease. We need to ensure that all hospitals participate in this second study, and that they receive appropriate payment in conducting this valuable research. This will require CMS or Congress to ensure that pass through is retained just for this limited study. If hospitals do not participate in the study, patient access will be limited.

While there may be no cure for Alzheimer’s disease today, symptoms are treatable. This new potential coverage undertaken by CMS will increase access to long-term services and supports that assist people with dementia and their caregivers in their home. We ask for the Advisory Council’s support and again thank the Council for the opportunity to provide comments at this meeting.


  1. (last visited Oct. 15, 2019).
  2. (last visited Oct. 15, 2019).
  3. (last visited Oct. 15, 2019).
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  5. (last visited Oct. 14, 2019).


M. Hogan  |  10-14-2019

Thank you for this opportunity to make a brief comment. My name is Mary Hogan. I have been in attendance at the many of the Advisory Council meetings since 2011 to give voice to the special challenges faced by individuals with Down syndrome, their families and other care partners. My brother Bill had Down syndrome and died of complications of Alzheimer’s disease at age 49. His death occurred the day before Senator Evan Bayh introduced the Bill (2/24/2010) that would eventually lead to the passage of the National Alzheimer’s Project Act early in 2011. Bill’s suffering as the disease progressed was torturous and has been the reason that I have remained a presence at this forum.

I wish to extend my gratitude to the new Non-Federal Co-chairs, to Helen Lamont, the Council at large and to those new members who have agreed to serve on this body to continue the important work that I have been witness to since 2011. As you serve on your selective sub-committees, I am hopeful that you will be dedicated to changing the disease trajectory for ALL people, including those with Down Syndrome who are at significantly higher risk for developing Alzheimer’s disease at a younger age. I am hopeful that you increase your awareness of the opportunities to be inclusive of ALL people as you focus on healthy brain initiatives, diagnostic challenges, access to best practices and caregiver’s challenges, including financial challenges. As I have repeatedly noted, I can only hope that you will embrace the concept that quality of life until end of life is a right for ALL people with neurodegenerative diseases.

In July I distributed copies of Alzheimer’s Disease and Down Syndrome Practical Guidebook for Caregivers to the Council members. I am hopeful that some, if not all of you, took time to peruse this important publication. This Guidebook was funded solely by the National Down Syndrome Society. The content is the result of collaborative efforts between the NTG and the Alzheimer’s Association. Lead author, Dr. Julie Moran, member of the NTG, remains devoted to the care of those with intellectual disabilities and Alzheimer’s disease and other dementias. It was an honor to serve as contributing author and a labor of love.

In light of the appointment of new Non-Federal Members, I would like to provide them with the Practical Guidebook so that they, too, can understand the unique challenges faced by those with Down Syndrome, their family members and other care partners.

I am hopeful that HHS/NIH/NIA/NICHD/CDC and the Alzheimer’s Association will find ways to utilize this Guidebook for Caregivers on their websites and assist with electronic dissemination. At present it appears to be included as part of the NAPA Council website in the public comments “Notes”. Additionally I look forward to the upcoming release of the IDD and Dementia Practical Strategies Guide from the National Alzheimer’s and Dementia Resource Center mentioned in the documents accompanying the July 2019 NAPA Council Meeting. The availability of resources for the IDD population is long overdue. The publication related to Dementia in Indian Country shared in July was appealing and informative. I can only hope that this IDD resource is equally as appealing and equally as informative.

Though you often assume your role on the Council as a representative of a specific population or constituency, we look to you to work in the best interest of ALL individuals who face the life-ending sentence of Alzheimer’s disease or other dementia. The task is daunting and your efforts greatly appreciated.


A. Taylor  |  10-09-2019

Thank you for the opportunity to provide public comment to the Advisory Council on Alzheimer’s Research, Care and Services.

I’m here to share some important research findings about the cost of dementia care by sub-type. The study[1] was led by Dr. Katherine Possin at the University of San Francisco and supported by funding from the Global Brain Health Institute, US Dept. of Health and Human Services, Centers for Medicare and Medicaid, the National Institute on Aging and National Institute for Neurological Disorders and Stroke.

The study aim was to identify direct health care costs and utilization by people diagnosed with dementia. Researchers analyzed 100% of the 2015 Medicare fee-for-service claims data in CA. This represented claims from over 3 million beneficiaries. The average cost of care for people in CA without dementia was just over $6K in 2015. Care for those diagnosed with dementia was nearly three times higher at just under $17k.

The analysis also compared costs of individuals with specific dementia diagnosis, specifically Alzheimer’s disease (AD), Lewy body dementias (LBD), vascular or frontotemporal dementia. In the crude analysis, those with LBD had the highest cost of care, at over $22K/beneficiary. LBD costs were 25% higher than the average care cost of dementia care. People diagnosed with Alzheimer’s disease had the lowest healthcare cost of the 4 dementia subtypes, just under $14K.

Costs were also broken-down costs by specific services, including hospitalization, physician visits, emergency room visits, and ambulance services. People with LBD had the highest average number of physician visits, at 42 visits in 2015.

Care cost differences were largely driven by differences in hospitalization. The cost and length of hospital stays were highest for vascular dementia and LBD, each almost double the cost of AD. These higher costs were driven by more frequent visits to the emergency department and the use of ambulances. Those with LBD also had higher Medicare-funded home health costs.

Researchers then controlled for demographic, comorbid conditions and length of Medicare coverage in 2015. Those with LBD had the highest care costs, and on average were 31% than those with Alzheimer’s disease.

The study revealed people with LBD had the highest proportion of the following: a history of falls, urinary issues including incontinence or infection, dehydration, depression and anxiety. LBD had the second highest proportion with delirium, delusions and sleep disorders.

Breaking LBD into the two specific diagnoses of dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), DLB care was about $2k more expensive in 2015 than PDD, again driven by inpatient care. While this study highlights the cost of care after a diagnosis is made, research suggests DLB is commonly missed when dementia is first diagnosed; so, the care costs may be higher.

Understanding what drives the higher care costs of LBD opens opportunities to develop and proactively deliver interventions in a home or outpatient setting. The study authors recommend programs focus on items that drive up the cost of LBD healthcare, including fall prevention, early identification and treatment of medical issues including urinary tract infections and dehydration, and attention to any sudden change in health status such as delirium, worsening psychiatric symptoms and sleep problems.

This study emphasizes recommendations made at the 2017 Dementia Care and Services Summit: the importance of developing tailored, non-pharmacological interventions for specific dementia sub-types, with the aim of improving health outcomes, reducing caregiver burden, and reducing the utilization and cost of medical care.

I hope these comments provide an even greater appreciation for the cost (pun definitely intended) of an LBD diagnosis on individuals, families and society.

I thank the Council, both federal and non-federal members, for all your continued work to advance progress on the 2025 goals of the National Alzheimer’s Plan.


  1. Chen Y, Wilson L, Kornak J, et al. The costs of dementia subtypes to California Medicare fee-for-service, 2015. Alzheimers Dement. 2019;15:899-906.