[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1897 Introduced in House (IH)]

112th CONGRESS
  1st Session
                                H. R. 1897

To amend the Public Health Service Act to require a Federal commitment 
to Alzheimer's disease research to advance breakthrough treatments for 
                people living with Alzheimer's disease.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              May 13, 2011

Mr. Smith of New Jersey (for himself, Mr. Markey, Mr. Burgess, and Mr. 
   Platts) introduced the following bill; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to require a Federal commitment 
to Alzheimer's disease research to advance breakthrough treatments for 
                people living with Alzheimer's disease.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Alzheimer's Breakthrough Act of 
2011''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Alzheimer's disease is a disorder that destroys cells 
        in the brain. The disease is the leading cause of dementia, a 
        condition that involves gradual memory loss, decline in the 
        ability to perform routine tasks, disorientation, difficulty in 
        learning, loss of language skills, impairment of judgment, and 
        personality changes. As the disease progresses, people with 
        Alzheimer's disease become unable to care for themselves. The 
        loss of brain cells eventually leads to the failure of other 
        systems in the body.
            (2) Alzheimer's disease is the sixth leading cause of death 
        in the United States and remains the only one of the top ten 
        causes of death without an identified way to prevent, cure, or 
        slow its progression.
            (3) An estimated 5.4 million Americans have Alzheimer's 
        disease. With the aging of the baby boomers, the number of 
        Americans with Alzheimer's disease will likely reach 13.5 
        million in 2050--and could be as high as 16 million.
            (4) An individual will live with the increasingly 
        devastating, debilitating, and destructive effects of 
        Alzheimer's disease for an average of 4 to 8 years after 
        diagnosis, and some live as long as 20 years.
            (5) Alzheimer's disease does not just affect those with the 
        disease but takes an emotional, financial, and physical toll on 
        caregivers. In 2010, nearly 15 million Americans provided 17 
        billion hours of unpaid care to family members and friends with 
        Alzheimer's disease and other dementias at a total value of 
        over $202 billion.
            (6) In 2011, Medicare is expected to spend $93 billion for 
        the care of individuals with Alzheimer's disease and other 
        dementias and this amount is projected to increase to $627 
        billion in 2050. Medicaid costs is expected to increase nearly 
        400 percent, from $37 billion in 2011 to $178 billion in 2050.
            (7) In fiscal year 2010, the Federal Government spent $450 
        million on Alzheimer's disease research. For every $100 the 
        Federal Government spent on Alzheimer's disease research in 
        fiscal year 2010, Medicare and Medicaid spent more than $28,000 
        for care for people with Alzheimer's disease.
            (8) Research leading to treatments that delay onset of 
        Alzheimer's disease by just five years would cut Federal 
        Government spending on the disease by 45 percent in 2050.
            (9) In 2010, Congress passed the National Alzheimer's 
        Project Act, which instructs the Department of Health and Human 
        Services to develop a strategic plan (referred to in this 
        section as the ``National Alzheimer's Project plan'') to 
        address the rapidly escalating Alzheimer's disease crisis.
            (10) The annually updated National Alzheimer's Project plan 
        must be transmitted to Congress each year and is to include 
        outcome-driven objectives, recommendations for priority 
        actions, and coordination of all federally funded programs in 
        Alzheimer's disease research, care, and services.
            (11) It is expected that the National Alzheimer's Project 
        plan will include research priority actions to accelerate the 
        development of treatments that would prevent, cure, or slow the 
        progression of Alzheimer's disease.
            (12) The medical and research communities have the ideas, 
        the technology, and the will, but need the Federal Government 
        to commit to an innovative research approach, to find 
        breakthroughs that will provide significant returns on 
        investment and will save millions of lives.

SEC. 3. REQUIRING A FEDERAL COMMITMENT TO ALZHEIMER'S DISEASE RESEARCH.

    (a) In General.--Part A of title IV of the Public Health Service 
Act (42 U.S.C. 281 et seq.) is amended by adding at the end the 
following new section:

``SEC. 404I. REQUIRING A FEDERAL COMMITMENT TO ALZHEIMER'S DISEASE 
              RESEARCH.

    ``(a) Definition of Alzheimer's.--In this section, the term 
`Alzheimer's' means Alzheimer's disease and related dementias.
    ``(b) Purpose.--The purpose of this section is to develop and 
execute a scientific research plan to accelerate breakthroughs in 
treatments that prevent, cure, or slow the progression of Alzheimer's 
disease and reduce the financial burden of Alzheimer's on federally 
funded programs and families.
    ``(c) Federal Commitment to Alzheimer's Disease Research.--For the 
purpose described in subsection (b), the Director of NIH shall 
coordinate and focus all Alzheimer's research activities of the 
National Institutes of Health. Such activities shall include the 
following:
            ``(1) The establishment of a strategic Alzheimer's research 
        plan--
                    ``(A) to expedite therapeutic outcomes for 
                individuals with or at risk for Alzheimer's, using 
                scientifically based strategic planning, for the 
                conduct, coordination, and support of the Alzheimer's 
                research portfolio within the Office of the Director of 
                NIH and across all Institutes and Centers of the 
                National Institutes of Health; and
                    ``(B) that, with respect to such Alzheimer's 
                research--
                            ``(i) identifies research opportunities 
                        relating to emerging science, knowledge gaps, 
                        and priorities of the National Institutes of 
                        Health and provides recommendations for 
                        conducting such research;
                            ``(ii) identifies opportunities to 
                        incorporate Alzheimer's disease research in all 
                        relevant aging, neuroscience, basic, clinical, 
                        and translational science initiatives carried 
                        out by the National Institutes of Health, 
                        including initiatives that are trans-National 
                        Institutes of Health, innovative, and 
                        nontraditional initiatives;
                            ``(iii) improves existing Alzheimer's 
                        programs and initiatives at the National 
                        Institutes of Health, including consolidation 
                        or expansion of program activities, if such 
                        consolidation or expansion would improve 
                        program efficiencies and research outcomes;
                            ``(iv) identifies gaps in the supporting 
                        infrastructure and the coordination of the 
                        Alzheimer's research portfolio across the 
                        Institutes and Centers of the National 
                        Institutes of Health, including the Alzheimer's 
                        Disease Centers and Alzheimer's Disease 
                        Research Centers and all intramural and 
                        extramural Alzheimer's-related activities;
                            ``(v) identifies public-private partnership 
                        opportunities to expedite the development of 
                        mechanisms for early diagnosis and therapies 
                        and assistive technologies for Alzheimer's, 
                        including such therapies and technologies that 
                        demonstrate high promise of substantially 
                        slowing, stopping, or reversing Alzheimer's and 
                        reducing the amounts that the Federal 
                        Government would spend on the future care 
                        provided to individuals who develop 
                        Alzheimer's;
                            ``(vi) identifies opportunities to increase 
                        research and improve clinical outcomes for 
                        women and minority populations at high-risk of 
                        developing Alzheimer's; and
                            ``(vii) incorporates the research priority 
                        actions identified by the Secretary and 
                        Advisory Council on Alzheimer's Research, Care, 
                        and Services in the report submitted by the 
                        Secretary to Congress under section 2(g) of the 
                        National Alzheimer's Project Act (42 U.S.C. 
                        11225(g)).
            ``(2) The provision of budget estimates, without regard to 
        the probability that such amounts so estimated will be 
        appropriated, including--
                    ``(A) budget estimates of the amounts required for 
                the Institutes and Centers of the National Institutes 
                of Health to carry out all Alzheimer's activities 
                identified in the strategic research plan developed 
                under paragraph (1);
                    ``(B) budget estimates of the amounts required to 
                carry out all identified research priority actions 
                described in paragraph (1)(B)(vii); and
                    ``(C) identification of funds in the existing 
                budget of the National Institutes of Health to 
                accomplish Alzheimer's activities identified by the 
                strategic research plan developed under paragraph (1).
    ``(d) Public-Private Partnerships.--In providing for Alzheimer's 
research activities, the Director of NIH and the Directors of 
Institutes and Centers of the National Institutes of Health conducting 
Alzheimer's research, shall make available contracts, grants, or 
cooperative agreements to facilitate partnerships between public and 
private entities, which may include private or public research 
institutions, institutions of higher education, medical centers, 
biotechnology companies, pharmaceutical companies, disease advocacy 
organizations, patient advocacy organizations, or academic research 
institutions. Such partnerships may be established for, but not limited 
to, any of the following purposes:
            ``(1) To execute the Alzheimer's research plan established 
        under subsection (c)(1).
            ``(2) To support the development of diagnostic technologies 
        and protocols to encourage early diagnosis of individuals at 
        risk for Alzheimer's and to permit the tracking of the 
        progression of Alzheimer's in asymptomatic or symptomatic 
        populations.
            ``(3) To develop and diffuse data sharing practices that 
        accelerate the advancement of knowledge and understanding of 
        the pathogenesis, progression, prevention, and treatment of 
        Alzheimer's.
    ``(e) Reporting.--
            ``(1) The Director of NIH shall annually report to the 
        Secretary, the Advisory Council on Alzheimer's Research, Care, 
        and Services, and the appropriate committees of jurisdiction in 
        Congress, on the strategic research plan and budget estimates 
        under subsection (c).
            ``(2) The Director of NIH shall, as part of its annual 
        request for appropriations to the Office of Management and 
        Budget, submit to the Office of Management and Budget and the 
        Committees on Appropriations of the House of Representatives 
        and the Senate a report which--
                    ``(A) includes budget estimates developed under 
                subsection (c)(2);
                    ``(B) subject to subparagraph (C), includes 
                requests for amounts to be appropriated for all 
                Alzheimer's activities identified in the strategic 
                research plan under subsection (c)(1);
                    ``(C) includes, in the case a request is not made 
                under subparagraph (C) for an activity identified in 
                such strategic research plan, a full justification 
                explaining why such request was not made; and
                    ``(D) analyzes the progress made toward 
                accelerating breakthroughs in treatments that would 
                prevent, cure, or slow the progression of Alzheimer's 
                and reducing spending on Alzheimer's care under 
                federally funded programs and families and identifies 
                any remaining hurdles to accelerating such 
                breakthroughs or reducing such financial burden.''.
    (b) Alzheimer's Disease Centers.--Section 445(a)(1) of the Public 
Health Service Act (42 U.S.C. 285e-2(a)(1)) is amended--
            (1) by inserting ``, translational'' after ``basic''; and
            (2) by inserting ``and of outcome measures, and disease 
        management'' after ``treatment methods''.
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