S 1555 IS
To establish the Office of the National Alzheimer’s Project.
IN THE SENATE OF THE UNITED STATES
July 31, 2009
July 31, 2009
Mr. MARTINEZ (for himself, Mr. BAYH, Ms. COLLINS, Mr. BENNET, Mr. FEINGOLD, and Mr. TESTER) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions
To establish the Office of the National Alzheimer’s Project.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; FINDINGS.
(a) Short Title- This Act may be cited as the ‘Office of the National Alzheimer’s Project Act’.
(b) Findings- Congress finds that according to the 2009 Alzheimer’s Study Group National Strategic Plan and the 2009 Alzheimer’s Disease Facts and Figures report of the Alzheimer’s Association--
(1) Alzheimer’s disease is a progressive, debilitating, terminal disease with no known cure;
(2) Alzheimer’s disease was the sixth leading cause of death in the United States for all ages in 2006 and the fifth leading cause of death for people age 65 and older;
(3) currently, an estimated 5,300,000 Americans of all ages have Alzheimer’s disease, and 13 percent of people age 65 and older have Alzheimer’s disease;
(4) of those with Alzheimer’s disease some minority populations are disproportionately suffering from the disease;
(5) there are 78,000,000 people in the baby boom generation, and in 2011, the first baby boomers will turn 65, and by 2029, all baby boomers will be at least 65 years old;
(6) the number of people aged 65 and older with Alzheimer’s disease is estimated to reach 7,700,000 in 2030, more than a 50 percent increase from the 5,100,000 aged 65 and older who are currently affected;
(7) the 85 years and older population currently comprises nearly 50 percent of the individuals with Alzheimer’s disease, or about 2,700,000 people, and by the time the first wave of baby boomers reaches age 85 years (2031), there will be an estimated 3,500,000 people aged 85 and older with Alzheimer’s;
(8) in 2008, 9,900,000 unpaid caregivers provided care valued at $94,000,000,000 for a person with Alzheimer’s disease or other dementia;
(9) total per-person payments from all sources for health and long-term care were three times higher for Medicare beneficiaries with Alzheimer’s disease: $33,007 compared to $10,603;
(10) in 2009 the Federal Government will spend more than $100,000,000,000 through Medicare and Medicaid to care for those with Alzheimer’s disease;
(11) if the United States follows current trends the Federal Government will spend more than $1,000,000,000,000 per year by 2050 on Alzheimer’s disease care; and
(12) between 2010 and 2050 Medicare and Medicaid programs are projected to spend $20,000,000,000,000 for Alzheimer’s disease care.
SEC. 2. OFFICE OF THE NATIONAL ALZHEIMER’S PROJECT.
(a) Establishment of Office- There is established in the Office of the President the Office of the National Alzheimer’s Project (referred to in this Act as the ‘Office’).
(b) Purpose of the Office- The Office shall--
(1) accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer’s;
(2) be responsible for the creation and maintenance of an integrated national plan to overcome Alzheimer’s;
(3) help to coordinate the health care and treatment of citizens with Alzheimer’s;
(4) 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; and
(5) coordinate with international bodies to integrate and inform the fight against Alzheimer’s globally.
(c) Director of the Office-
(1) APPOINTMENT- The President by and with the advice and consent of the Senate shall appoint a Director of the Office.
(2) DUTIES OF THE DIRECTOR-
(A) IN GENERAL- The Director of the Office shall--
(i) oversee the creation and updating of the national plan described in subparagraph (B);
(ii) use discretionary authority to evaluate all Federal programs around Alzheimer’s, including budget requests and approvals; and
(iii) prepare and submit to the President the annual budget estimate for the Office.
(B) 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.
(3) SERVICE BY DIRECTOR- The Director of the Office shall serve--
(A) 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, or may appoint a designee to sit on such board; and
(B) on the Domestic Policy Council to represent those who have or will develop Alzheimer’s, including on matters of housing, transportation, and education.
(d) Advisory Council-
(1) 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’).
(A) IN GENERAL- The Advisory Council shall be comprised of the following:
(i) A designee of the Office of Science of the Department of Energy.
(ii) A designee of the Office of the Secretary of the Department of Health and Human Services.
(iii) A designee of the Administration on Aging.
(iv) A designee of the Centers for Medicare & Medicaid Services.
(v) A designee of the Indian Health Service.
(vi) A designee of the Office of the Director of the National Institutes of Health.
(vii) The Surgeon General.
(viii) A designee of the National Science Foundation.
(ix) A designee of the Department of Veterans Affairs.
(B) NON-FEDERAL MEMBERS-
(i) IN GENERAL- In addition to the members outlined in subparagraph (A), the Advisory Council shall include 12 members from outside the Federal Government, including 2 members who are patient advocate members and 2 members who represent States, and members appointed pursuant to clause (ii).
(ii) CONGRESSIONAL APPOINTMENTS-
(I) IN GENERAL- In addition to the members outlined in subparagraph (A) and clause (i), the majority and minority leaders of the Senate and the Speaker and minority leader of the House of Representatives shall each appoint 2 members from the pool described in clause (II) to the Advisory Council for a 2-year term, with each such member eligible to be reappointed.
(II) REMAINING NON-FEDERAL MEMBERS- The remaining non-Federal members shall be representatives of academia, research, health and elder care delivery (both community-based and institutional), technology, or other related sectors.
(III) VACANCIES- Any member appointed under this clause to fill a vacancy occurring prior to the expiration of the term for which the member’s predecessor was appointed shall be appointed for the remainder of such term. A member appointed under this clause shall serve until the member’s replacement has been appointed.
(3) MEETINGS- The Advisory Council shall meet quarterly and such meetings shall be open to the public.
(4) ADVICE- The Advisory Council shall advise the Director of the Office.
(5) ANNUAL REPORT- The Advisory Council shall provide to the Director of the Office--
(A) recommendations for information to be included in the annual report to Congress by the Office; and
(B) an annually updated national plan.
(e) Annual Report- The Director of the Office shall submit to Congress--
(1) 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
(2) an annually updated national plan.
(f) Sunset- The Office shall expire on December 31, 2025.