The National Alzheimer's Project Act would create the country’s first national office responsible for leading government efforts to treat and prevent Alzheimer’s disease.....By Bob DeMarco
Alzheimer's Reading Room
Alzheimer’s is a devastating disease that takes a tremendous emotional and economic toll on individuals and their families. “While there have been promising advances in research and treatment to combat this disease, our nation needs a more effective, coordinated national strategy aimed at preventing, delaying and finding a cure for Alzheimer’s. This legislation, which would coordinate a strong and sustained federal research effort, represents a critical step toward that goal. This is particularly important now, at a time when the baby boom generation is aging and moving into the years of highest risk for the disease. -- Susan Collins (R-ME)
The National Alzheimer's Project Act
Senators Evan Bayh (D-IN) and Susan Collins (R-ME) introduced the bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions.
The Bill
Purpose of the Office -- The Office shall--
- accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer's;
- be responsible for the creation and maintenance of an integrated national plan to overcome Alzheimer's;
- help to coordinate the health care and treatment of citizens with Alzheimer's;
- ensure the inclusion of ethnic and racial populations at higher risk for Alzheimer's or least likely to receive care, in clinical, research, and service efforts with the purpose of decreasing health disparities in Alzheimer's;
- oordinate with international bodies to integrate and inform the fight against Alzheimer's globally;
- and provide information and coordination of Alzheimer's research and services across all Federal agencies.
Director of the Office
- APPOINTMENT- The President shall appoint a Director of the Office
- DUTIES OF THE DIRECTOR-
IN GENERAL -- The Director of the Office shall --
- oversee the creation and updating of the national plan described in subparagraph (B);
- use discretionary authority to evaluate all Federal programs around Alzheimer's, including budget requests and approvals; and
- prepare and submit to the President the annual budget estimate for the Office.
NATIONAL PLAN -- The Director of the Office shall carry out an annual assessment of the Nation's progress in preparing for the escalating burden of Alzheimer's, including both implementation steps and recommendations for priority actions based on the assessment.
SERVICE BY DIRECTOR -- The Director of the Office shall serve on the advisory board of the Office of Science and Technology to promote research efforts into mechanisms to slow and stop the development of Alzheimer's for those at risk of developing the disease.
Advisory Council --
- IN GENERAL- There is established in the Office an Advisory Council on Alzheimer's Research and Treatment (referred to in this Act as the `Advisory Council')
FEDERAL MEMBERS -- The Advisory Council shall be comprised of the following experts:
- A designee of the Centers for Disease Control and Prevention.
- A designee of the Administration on Aging.
- A designee of the Centers for Medicare and Medicaid Services.
- A designee of the Indian Health Service.
- A designee of the Office of the Director of the National Institutes of Health.
- The Surgeon General.
- A designee of the National Science Foundation.
- A designee of the Department of Veterans Affairs.
NON-FEDERAL MEMBERS -- In addition the Advisory Council shall include 12 expert members from outside the Federal Government, which shall include--
- 2 Alzheimer patient advocates;
- 2 Alzheimer caregivers;
- 2 health care providers;
- 2 representatives of State health departments;
- 2 researchers with Alzheimer-related expertise in basic, translational, clinical, or drug development science; and
- 2 voluntary health association representatives, including a national Alzheimer's disease organization that funds research and has demonstrated experience in care and patient services, and a State-based advocacy organization that provides services to families and professionals, including information and referral, support groups, care consultation, education, and safety services.
Annual Report -- The Director of the Office shall submit to Congress --
- an annual report that includes an evaluation of all nationally and federally funded efforts in Alzheimer's research, clinical care, institutional, and home- and community-based programs and their outcomes; and
- an annually updated national plan.
Sunset -- The Office shall expire on December 31, 2025.
Bayh, Collins Combat Alzheimer’s Disease
National office would coordinate federal research to improve treatment and prevention; develop a cure
Senators Evan Bayh (D-IN) and Susan Collins (R-ME) today introduced legislation to create the country’s first national office responsible for leading government efforts to treat and prevent Alzheimer’s disease. Located within the Department of Health and Human Services, the National Alzheimer’s Project Office would coordinate and oversee federal research on Alzheimer’s disease to develop a plan to combat the disease and to eventually develop a cure.
“Alzheimer’s disease is a debilitating illness that affects more than 5 million Americans and their families every day,” said Bayh, a member of the Senate Special Committee on Aging. “Creating the National Alzheimer’s Project Office will ensure we get better research, improved patient care and hopefully a cure for this devastating disease. At a time when medical research funds are too scarce, it is critical that every dollar spent on Alzheimer’s disease be used to get the best possible care for patients.”
“Alzheimer’s is a devastating disease that takes a tremendous emotional and economic toll on individuals and their families,” Collins said. “While there have been promising advances in research and treatment to combat this disease, our nation needs a more effective, coordinated national strategy aimed at preventing, delaying and finding a cure for Alzheimer’s. This legislation, which would coordinate a strong and sustained federal research effort, represents a critical step toward that goal. This is particularly important now, at a time when the baby boom generation is aging and moving into the years of highest risk for the disease.”
“On behalf of the millions of people living with Alzheimer’s and the millions more at risk of developing this terminal disease in the future, the Alzheimer’s Association is grateful for the leadership of Senators Bayh and Collins,” said Robert J. Egge, the Alzheimer’s Association’s Vice President of Public Policy and Advocacy. “This legislation, if enacted, would significantly improve the nation’s ability to overcome the rapidly mounting Alzheimer crisis.”
Alzheimer’s disease is a progressive, disabling and terminal disease of the mind and body. All those who have Alzheimer’s disease will eventually require around-the-clock care. Approximately 5.3 million Americans have Alzheimer’s disease, and that number is estimated to reach 7.7 million by 2030. Twenty-three percent of all Americans have had to care for a parent or relative with Alzheimer’s.
The bipartisan National Alzheimer’s Project Act follows through on a key recommendation from the Alzheimer’s Study Group, which issued a report in 2007 calling on Congress to create a national office dedicated to addressing the disease.
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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room
