1. Short title; table of contents; findings
Short title— This Act may be cited as the “Concentrating on High-value Alzheimer’s Needs to Get to an End (CHANGE) Act of 2019”.
Table of contents— The table of contents for this Act is as follows:
Findings— Congress finds the following:
It is estimated that 5,800,000 million Americans are living with Alzheimer's disease in 2019. This includes an estimated 5,600,000 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer's. By 2050, the number of people age 65 and older with Alzheimer’s dementia is projected to increase to 13,800,000 Americans.
As many as half of the estimated 5,100,000 American seniors with Alzheimer’s disease and other dementias have never received a diagnosis.
In 2019, it is expected that Alzheimer’s and related dementias will cost Medicare and Medicaid $195,000,000,000. By 2050, it is estimated that overall Alzheimer’s costs will increase to more than $1,100,000,000,000.
Alzheimer’s exacts an emotional and physical toll on caregivers, resulting in higher incidence of heart disease, cancer, depression, and other health consequences.
Alzheimer’s disease disproportionately impacts women and people of color. Women are twice as likely to develop Alzheimer's as they are breast cancer. African Americans are about 2 times more likely than White Americans to have Alzheimer's disease and other dementias. Latinos are about 11/2 times more likely than White Americans to have Alzheimer’s disease and other dementias. According to the Centers for Disease Control, among people ages 65 and older, African Americans have the highest prevalence of Alzheimer’s disease and related dementias (13.8 percent), followed by Hispanics (12.2 percent), and non-Hispanic Whites (10.3 percent), American Indian and Alaska Natives (9.1 percent), and Asian and Pacific Islanders (8.4 percent). This higher prevalence translates into a higher death rate: Alzheimer's deaths increased 55 percent among all Americans between 1999 and 2014, while the number was 107 percent for Latinos and 99 percent for African Americans.
The latest science reveals there are actions that can be taken both now and across the lifespan of an individual to help optimize brain health, reduce the risk of cognitive decline, and help mitigate symptoms. There are also important behavioral and social dimensions that could delay cognitive decline and build a resilient brain. For example, a 2016 study supported by the National Institutes of Health found that a diet high in natural plant-based foods and limited in saturated fats was associated with reduced cognitive decline. A 2017 study published by the Lancet Commission found that physical activity had a significant protective effect against cognitive decline. A study supported by the National Institutes of Health which was published in 2018 found a connection between lower blood pressure and decreased cognitive impairment. An American Academy of Neurology study recently published found that physical activity and cognitive activity were both associated with reduced risk of total dementia.
There are evidence-based, reliable, and National Institutes of Health-identified cognitive impairment detection tools that are available on the Alzheimer’s and Dementia Resources website of the National Institute on Aging that must replace detection by direct observation in the Medicare Annual visits and Welcome to Medicare visits. The National Institutes of Health-identified tools will allow for appropriate follow-up instead of delaying diagnosis or impeding opportunities for patients to access timely treatment options, including clinical trial participation.
An early, documented diagnosis, communicated to the patient and caregiver, enables early access to care planning services and available medical and nonmedical treatments, and optimizes the ability of patients to build a care team, participate in support services, and enroll in clinical trials.
African Americans represent 13 percent of the United States population, but only 5 percent of clinical trial participants, and Latinos represent 17 percent of the United States population, but less than 1 percent of clinical trial participants. Further, Latinos and African Americans account for only 3.5 percent and 1.2 percent, respectively, of principal investigators supported by the National Institutes of Health funding, limiting this perspective in research. Better recruitment and trial designs are critical to addressing innovation in Alzheimer’s generally, including the underrepresentation of African Americans and Latinos.
Inability to identify eligible patients at the earliest stages of disease is a substantial impediment to efficient research toward Alzheimer’s disease prevention, treatment, and cure.
Advancing treatment options to prevent, treat, or cure Alzheimer’s is an urgent national priority.
A paradigm shift to drive synergies between high-value patient care, caregiver support, brain health promotion, and research initiatives is our best hope for preventing, treating, and curing Alzheimer’s disease.