The BOLD Infrastructure for Alzheimer’s Act (S 2076, 115th Congress)

The Policy

Synopsis

The goal of the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (S 2076) is to expand the Public Health Service Act (42 U.S.C. § 280g et seq) by establishing a national public health infrastructure dedicated exclusively to the prevention of Alzheimer’s disease (AD), as well as improving the treatment of individuals with AD and/or related dementias. To accomplish this, the bill outlines three primary avenues for action:

Establishing centers of excellence in public health practice related to Alzheimer’s disease:

The bill authorizes funds for the establishment of regional centers (i.e., higher education institutes; state, local, or tribal health departments; tribal organizations; associations; or other appropriate entities) of excellence in public health practice related to AD. Specifically, these centers will contribute to the education of public health officials, health care professionals, and the general public on AD. They will be leaders in applying evidence-based best practices to enhancing the early detection of AD, supporting the needs of caregivers, and reducing health disparities related to patients’ access to high-quality care. Awards will be granted with the consideration of both geographical area and disease burden with respect to the proposed AD centers. The centers will be required to submit annual reports to the Centers for Disease Control and Prevention (CDC) outlining the programs funded and their associated outcomes.

Increasing data related on the prevalence of Alzheimer’s disease:

The bill further authorizes funds, to be distributed by the CDC, for grants, contracts, and cooperative agreements to improve data collection on “cognitive decline, caregiving, and health disparities experienced by individuals with cognitive decline and their caregivers.” This fund will be dedicated to increasing the rate of analysis and public reporting of AD data with the goal of encouraging evidence-based public health policies. Awardees of the grants may use the Behavioral Risk Factor Surveillance System, the National Health and Nutrition Examination Survey, and the National Health Interview Study to analyze, report, and disseminate data.

Creating cooperative agreement awards to strengthen Alzheimer’s disease public health initiatives:

The bill authorizes funds to award state health departments, state political subdivisions, or tribal organizations with cooperative agreements to execute evidence-based interventions regarding:

  • Education and communication about AD and related dementias;
  • Early detection and diagnosis;
  • Mitigating potentially avoidable hospitalizations;
  • Minimizing cognitive decline and cognitive impairment in individuals with AD and related dementias;
  • Improving caregiver and patient support;
  • Assisting with care planning and management; and
  • Assisting other activities, as deemed appropriate

In addition, any health department awarded with a cooperative agreement must furnish 30 percent of the funds specified in the agreement to execute the proposed activities.

Context

Currently, there are approximately 5.5 million people diagnosed with AD living in the United States, costing the nation approximately $259 billion. By 2050, it is estimated that the number of people diagnosed with AD could rise to 16 million, with a corresponding cost of $1.1 trillion. Despite contributing to more deaths than breast cancer and prostate cancer combined, public funding for AD research was approximately 22% that of all cancers ($1.36 billion versus $5.98 billion, respectively) in 2017.

In 2005, the CDC established The Healthy Brain Initiative under the umbrella of The Healthy Aging Program. In partnership with the National Institute on Aging within the National Institutes of Health (NIH), the Administration on Aging, and AARP, they designed the Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health. This road map includes specific actions for regional public health departments to take, including defining the needs of caregivers, researching interventions that effectively decrease preventable hospitalizations, and increasing public awareness about AD and other types of dementia. The BOLD Infrastructure for Alzheimer’s Act seeks to augment the implementation of the Road Map criteria nationwide.

The Science

Science Synopsis

Alzheimer’s disease (AD), the most common form of dementia, is characterized by progressive cognitive decline and memory loss. Although there is no cure for AD or other dementias, certain medications, lifestyle changes, and management strategies may ameliorate disease symptoms.

There is no singular cause of AD, and further research is needed to identify the underlying causes and neural mechanisms governing the disease. A person’s risk of being diagnosed with AD or a related type of dementia is due to a combination of family history (e.g. genetic predisposition), lifestyle (e.g. diet and physical activity), and environmental factors (e.g. exposure to chemicals and brain injury). For example, ongoing research suggests there may be a relationship between AD and other health conditions including diabetes, heart disease, and high blood pressure. Additionally, doctors often suggest regular exercise, eating a nutritious diet, and getting healthy amounts of sleep as ways to slow the rate of cognitive decline.

Contrary to popular belief, AD is not a consequence of normal aging. At early stages of the disease, individuals often report difficulty remembering words and organizing their thoughts. As the disease progresses, these symptoms progress to immense difficulty with memory, thinking, reasoning, planning tasks, and can even result in drastic personality changes.

As the disease progresses, distinct changes in brain structure occur; the hallmark of AD is an accelerated rate of damage and death to brain cells. However, AD does not impact all brain regions equally, but rather some parts of the brain are more susceptible to the disease than others. The most heavily impacted regions of the brain include the hippocampus and entorhinal cortex early in the disease process, responsible for memory, and later in the disease the cerebral cortex, responsible for executive decision making, language, and social behavior. As AD progresses, additional brain regions may be targeted.

Additionally, biological markers called amyloid plaques and neurofibrillary tangles are observed upon postmortem examination of brain tissue from a person with AD. Amyloid plaques form when a protein called beta-amyloid clumps together, leading to disrupted intercellular communication. Similarly, neurofibrillary tangles are clumps of a protein called tau. In healthy brains, tau provides structural support to neurons and aids in the transport of nutrients throughout cells. However, in those with AD, tau preferentially accumulates in regions of the brain that have important roles in memory, hindering critical functions and impacting the ability of individuals to both form new memories and recall previous memories.  

Relevant Experts

Dr. Kathleen Welsh-Bohmer is a Professor of Psychiatry and Neurology at Duke University as well as the Chief of Medical Psychology Clinical Professional Unit. Since 2006 she has directed the Joseph and Kathleen Bryan Alzheimer’s Center in the Department of Neurology, where she leads a large multidisciplinary team focused on discovering the biological basis of Alzheimer’s disease and developing methods to enhance early diagnosis and speed drug discovery. Currently, she oversees the neuropsychology scientific operations of a Phase III global clinical trial to delay the onset of Alzheimer’s disease entitled the “TOMMORROW” study (funded by Takeda Pharmaceutical Company).


The Debate

Endorsements & Opposition

  • Sen. Shelley Moore Capito (R-WV), press release, November 6th, 2017: “Alzheimer’s is such a devastating disease that affects millions of Americas and their loved ones, and the more we can do to find a cure, the better. By creating a public health infrastructure, this bipartisan legislation will help us tackle Alzheimer’s on all fronts and move us closer to finding a cure.”
  • Sen. Susan Collins (R-ME), press release, November 6th, 2017:  “Alzheimer’s disease is one of the greatest and under-recognized public health threats of our time. Five and a half million Americans are living with the disease, and that number is soaring as our overall population grows older and lives longer. After decades of expanding biomedical research in Alzheimer’s, we are ready for the next step: to translate research into practice. I urge my colleagues to join us as cosponsors of this critical bipartisan legislation.”
  • Sen. Catherine Cortez Masto (D-NV), press release, November 6th, 2017: “The BOLD Infrastructure for Alzheimer’s Act will address the scourge of Alzheimer’s by creating centers of excellence, and assisting state and local governments in their efforts to promote awareness through education and dissemination of best practices. We must work to promote Alzheimer’s prevention, enhance access to treatment, improve patients’ quality of life and find ways to end Alzheimer’s before it claims more lives.”
  • Robert Egge (Alzheimer’s Association Chief Public Policy Officer and AIM Executive Director), statement, November 6th, 2017:  “We are grateful for the bipartisan support by the BOLD Infrastructure for Alzheimer’s Act’s sponsors and for their continued leadership in the fight to end Alzheimer’s. While we work towards the development of effective preventions and treatments for Alzheimer's, we must implement effective public health solutions today that can help to improve the lives of and outcomes for those living with the disease.”
  • Rep. Brett Guthrie (R-KY-2), press release, November 7th, 2017: “This bill supports cooperative agreements between public and private entities focused on ways to develop best practices for intervention and caregiving, which will help lower costs and promote evidence based research for those who suffer from this awful disease and for those who care for these individuals.”
  • Harry Johns (Alzheimer’s Association and Alzheimer’s Impact Movement President and CEO), statement, November 6th, 2017: “Too often, Alzheimer’s and other dementias are viewed just as an aging issue, ignoring the public health consequences of a fatal disease that more than five million Americans are living with. The BOLD Infrastructure for Alzheimer’s Act will ensure communities across the country have access to resources to promote effective Alzheimer’s interventions and better cognitive health that can lead to improved health outcomes.”
  • Sen. Tim Kaine (D-VA), press release, November 7th, 2017: “States often lack resources that would help caregivers address patient needs. This bipartisan bill would improve care and outcomes by providing a full range of information and support to families caring for loved ones with Alzheimer’s, and boosting local efforts dedicated to addressing this pressing public health need.”
  • Ian Kremer (Executive Director of the Leaders Engaged on Alzheimer’s Disease Coalition), statement, November 8th, 2017: “This legislation is aligned with our efforts to prioritize the timely, accurate, compassionate and actionable detection and diagnosis of Alzheimer’s disease and other forms of dementia and would further support the CDC’s Healthy Brain Initiative.”
  • Rep. Paul Tonko (D-NY-20), press release, November 6th, 2017: “We have a critical opportunity to take another giant step forward on this issue, making investments in Alzheimer’s infrastructure that will drive public health research and promote prevention, early detection and diagnosis, all leading to lower costs and better care. I’m proud to stand alongside my fellow Alzheimer’s champions in introducing the BOLD Infrastructure for Alzheimer’s Act and I look forward to getting this important legislation signed into law.”