[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3286 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 3286

    To amend the Public Health Service Act to fund breakthroughs in 
 Alzheimer's disease research while providing more help to caregivers 
           and increasing public education about prevention.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             July 22, 2009

Mr. Markey of Massachusetts (for himself, Mr. Smith of New Jersey, Mr. 
   Carnahan, Mr. Gene Green of Texas, Mr. Kind, Mr. LaTourette, Mr. 
LoBiondo, Ms. Zoe Lofgren of California, Mr. Murphy of Connecticut, Mr. 
 Platts, Mr. Rahall, Mr. Rush, Ms. Schakowsky, Ms. Sutton, Mr. Wexler, 
 and Mr. Yarmuth) introduced the following bill; which was referred to 
                  the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
    To amend the Public Health Service Act to fund breakthroughs in 
 Alzheimer's disease research while providing more help to caregivers 
           and increasing public education about prevention.

    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 
2009''.

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) An estimated 5,300,000 Americans have Alzheimer's 
        disease and 1 in 10 individuals has a family member with the 
        disease. By 2050, the number of individuals with the disease 
        could reach 16,000,000 unless science finds a way to prevent or 
        cure the disease.
            (3) One in 8 people over the age of 65, and nearly half of 
        those over the age of 85 have Alzheimer's disease. Younger 
        people also get the disease.
            (4) The Alzheimer's disease process may begin in the brain 
        as many as 20 years before the symptoms of Alzheimer's disease 
        appear. An individual will live an average of 4 to 6 years, and 
        as many as 20 years, once the symptoms of Alzheimer's disease 
        appear.
            (5) In 2005, Medicare alone spent $91,000,000,000 for the 
        care of individuals with Alzheimer's disease and this amount is 
        projected to increase to $160,000,000,000 in 2010.
            (6) Ninety-five percent of Medicare beneficiaries with 
        Alzheimer's disease have one or more other chronic conditions 
        that are common in the elderly, such as coronary heart disease 
        (26 percent), congestive heart failure (16 percent), diabetes 
        (23 percent), and chronic obstructive pulmonary disease (15 
        percent).
            (7) Seven in 10 individuals with Alzheimer's disease live 
        at home. Cost for care at home is higher for people with 
        Alzheimer's disease than other individuals. Almost all families 
        pay some out-of-pocket costs.
            (8) Half of all nursing home residents have Alzheimer's 
        disease or a related disorder. The average annual cost of 
        Alzheimer's disease nursing home care is more than $77,000. 
        Medicaid pays half of the total nursing home bill and helps 2 
        out of 3 residents pay for their care. Medicaid expenditures 
        for nursing home care for people with Alzheimer's disease are 
        estimated to increase from $21,000,000,000 in 2005 to 
        $24,000,000,000 in 2010.
            (9) In fiscal year 2007, the Federal Government spent an 
        estimated $411,000,000 on Alzheimer's disease research. Over 
        the next 40 years, Alzheimer's disease-related costs to 
        Medicare and Medicaid alone are projected to total 
        $20,000,000,000,000 in constant dollars, rising to over 
        $1,000,000,000,000 per year by 2050. This amounts to less than 
        a penny spent on Alzheimer's disease research for each dollar 
        that the Federal Government spends on Alzheimer's disease-
        related costs each year.
            (10) It is estimated that the annual value of the informal 
        care system is $94,000,000,000. Family caregiving comes at 
        enormous physical, emotional, and financial sacrifice, putting 
        the whole system at risk.
            (11) Almost 60 percent of caregivers of individuals with 
        Alzheimer's disease are women, and over one-fourth have 
        children or grandchildren under the age of 18 living at home. 
        Caregiving leaves them less time for other family members and 
        they are much more likely to report family conflicts because of 
        their caregiving role.
            (12) Most Alzheimer's disease caregivers work outside the 
        home before beginning their caregiving careers, but caregiving 
        forces them to miss work, cut back to part-time, take less 
        demanding jobs, choose early retirement, or give up work 
        altogether. As a result, in 2002, Alzheimer's disease cost 
        American business an estimated $36,500,000,000 in lost 
        productivity, as well as an additional $24,600,000,000 in 
        business contributions to the total cost of care.

   TITLE I--INCREASING THE FEDERAL COMMITMENT TO ALZHEIMER'S RESEARCH

SEC. 101. DOUBLING NIH FUNDING FOR ALZHEIMER'S DISEASE RESEARCH.

    For the purpose of conducting and supporting research on 
Alzheimer's disease (including related activities under subpart 5 of 
part C of title IV of the Public Health Service Act (42 U.S.C. 285e et 
seq.)), there are authorized to be appropriated $2,000,000,000 for 
fiscal year 2010, and such sums as may be necessary for each of fiscal 
years 2011 through 2014.

SEC. 102. PRIORITY TO ALZHEIMER'S DISEASE RESEARCH.

    Section 443 of the Public Health Service Act (42 U.S.C. 285e) is 
amended--
            (1) by striking ``The general'' and inserting the 
        following:
    ``(a) In General.--The general;'' and
            (2) by adding at the end the following:
    ``(b) Priorities.--The Director of the Institute shall, in 
expending amounts appropriated to carry out this subpart, give priority 
to conducting and supporting Alzheimer's disease research.''.

SEC. 103. ALZHEIMER'S DISEASE PREVENTION INITIATIVE.

    Section 443 of the Public Health Service Act (42 U.S.C. 285e), as 
amended by section 102, is further amended by adding at the end the 
following:
    ``(c) Prevention Trials.--The Director of the Institute shall 
increase the emphasis on the need to conduct Alzheimer's disease 
prevention trials within the National Institutes of Health.
    ``(d) Neuroscience Initiative.--The Director of the Institute shall 
ensure that Alzheimer's disease is maintained as a high priority for 
the neuroscience initiative of the National Institutes of Health.''.

SEC. 104. ALZHEIMER'S DISEASE CLINICAL RESEARCH.

    (a) Clinical Research.--Subpart 5 of part C of title IV of the 
Public Health Service Act (42 U.S.C. 285e et seq.) is amended by adding 
at the end the following:

``SEC. 445J. ALZHEIMER'S DISEASE CLINICAL RESEARCH.

    ``(a) In General.--The Director of the Institute, pursuant to 
section 444(d), shall conduct and support cooperative clinical research 
regarding Alzheimer's disease. Such research shall include--
            ``(1) investigating therapies, interventions, and agents to 
        detect, treat, slow the progression of, or prevent Alzheimer's 
        disease;
            ``(2) enhancing the national infrastructure for the conduct 
        of clinical trials on Alzheimer's disease;
            ``(3) developing and testing novel approaches to the design 
        and analysis of such trials;
            ``(4) facilitating the enrollment of patients for such 
        trials, including patients from diverse populations;
            ``(5) developing improved diagnostics and means of patient 
        assessment for Alzheimer's disease;
            ``(6) the conduct of clinical trials on potential 
        therapies, including readily available compounds such as herbal 
        remedies and other alternative treatments;
            ``(7) research to develop better methods of early 
        diagnosis, including the use of current imaging techniques; and
            ``(8) other research, as determined appropriate by the 
        Director of the Institute after consultation with the 
        Alzheimer's disease centers and Alzheimer's disease research 
        centers established under section 445.
    ``(b) Early Diagnosis and Detection Research.--
            ``(1) In general.--The Director of the Institute, in 
        consultation with the directors of other relevant institutes 
        and centers of the National Institutes of Health, shall 
        conduct, or make grants for the conduct of, research related to 
        the early detection, diagnosis, and prevention of Alzheimer's 
        disease and of mild cognitive impairment or other potential 
        precursors to Alzheimer's disease.
            ``(2) Evaluation.--The research described in paragraph (1) 
        may include the evaluation of diagnostic tests and imaging 
        techniques.
            ``(3) Study.--Not later than 1 year after the date of 
        enactment of this section, the Director of the Institute, in 
        cooperation with the heads of other relevant Federal agencies, 
        shall conduct a study, and submit to Congress a report, to 
        estimate the number of individuals with early-onset Alzheimer's 
        disease (those diagnosed before the age of 65) and related 
        dementias in the United States, the causes of early-onset 
        dementia, and the unique problems faced by such individuals, 
        including problems accessing government services.
    ``(c) Vascular Disease.--The Director of the Institute, in 
consultation with the directors of other relevant institutes and 
centers of the National Institutes of Health, shall conduct, or make 
grants for the conduct of, research related to the relationship of 
vascular disease and Alzheimer's disease, including clinical trials to 
determine whether drugs developed to prevent cerebrovascular disease 
can prevent the onset or progression of Alzheimer's disease.
    ``(d) Treatments and Prevention.--The Director of the Institute 
shall place special emphasis on expediting the translation of research 
findings under this section into effective treatments and prevention 
strategies for individuals at risk of Alzheimer's disease and other 
dementias.
    ``(e) National Alzheimer's Coordinating Center.--The Director of 
the Institute may establish a National Alzheimer's Coordinating Center 
to facilitate collaborative research among the Alzheimer's Disease 
Centers and Alzheimer's Disease Research Centers established under 
section 445.''.
    (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 by inserting ``, 
outcome measures, and disease management,'' after ``treatment 
methods''.

SEC. 105. RESEARCH ON ALZHEIMER'S DISEASE CAREGIVING.

    Section 445C of the Public Health Service Act (42 U.S.C. 285e-5) is 
amended--
            (1) by striking ``Sec. 445C. Research Program and Plan 
        (a)'' and inserting the following:

``SEC. 445C. RESEARCH ON ALZHEIMER'S DISEASE SERVICES AND CAREGIVING.

    ``(a) Services Research.--'';
            (2) by striking subsections (b), (c), and (e);
            (3) by inserting after subsection (a) the following:
    ``(b) Interventions Research.--The Director of the Institute shall, 
in collaboration with the directors of the other relevant institutes 
and centers of the National Institutes of Health, conduct, or make 
grants for the conduct of, clinical, social, and behavioral research 
related to interventions designed to help caregivers of patients with 
Alzheimer's disease and other dementias and improve patient 
outcomes.'';
            (4) by redesignating subsection (d) as subsection (c); and
            (5) in subsection (c) (as redesignated by paragraph (4)), 
        by striking ``the Director'' and inserting ``Model Curricula 
        and Techniques.--The Director''.

SEC. 106. NATIONAL SUMMIT ON ALZHEIMER'S DISEASE.

    (a) In General.--Not later than 3 years after the date of enactment 
of this Act, and every 3 years thereafter, the Secretary of Health and 
Human Services (referred to in this section as the ``Secretary'') shall 
convene a National Summit on Alzheimer's Disease to--
            (1) provide a detailed overview of current research 
        activities relating to Alzheimer's disease at the National 
        Institutes of Health; and
            (2) discuss and solicit input related to potential areas of 
        collaboration between the National Institutes of Health and 
        other Federal health agencies, including the Centers for 
        Disease Control and Prevention, the Administration on Aging, 
        the Agency for Healthcare Research and Quality, and the Health 
        Resources and Services Administration, related to research, 
        prevention, and treatment of Alzheimer's disease.
    (b) Participants.--The summit convened under subsection (a) shall 
include researchers, representatives of academic institutions, Federal 
and State policymakers, public health professionals, and 
representatives of voluntary health agencies as participants.
    (c) Focus Areas.--The summit convened under subsection (a) shall 
focus on--
            (1) a broad range of Alzheimer's disease research 
        activities relating to biomedical research, prevention 
        research, and caregiving issues;
            (2) clinical research for the development and evaluation of 
        new treatments for Alzheimer's disease;
            (3) translational research on evidence-based and cost-
        effective best practices in the treatment and prevention of 
        Alzheimer's disease;
            (4) information and education programs for health care 
        professionals and the public relating to Alzheimer's disease;
            (5) priorities among the programs and activities of the 
        various Federal agencies regarding Alzheimer's disease and 
        other dementias; and
            (6) challenges and opportunities for scientists, 
        clinicians, patients, and voluntary organizations relating to 
        Alzheimer's disease.
    (d) Report.--Not later than 180 days after the date on which the 
summit is convened under subsection (a), the Director of the National 
Institutes of Health shall prepare and submit to the appropriate 
committees of Congress a report that includes a summary of the 
proceedings of the summit and a description of Alzheimer's disease 
research, education, and other activities that are conducted or 
supported through the National Institutes of Health.
    (e) Public Information.--The Secretary shall make readily available 
to the public information about the research, education, and other 
activities relating to Alzheimer's disease and other related dementias, 
that are conducted or supported by the National Institutes of Health.

TITLE II--PUBLIC HEALTH PROMOTION AND PREVENTION OF ALZHEIMER'S DISEASE

SEC. 201. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO COGNITIVE 
              HEALTH, ALZHEIMER'S DISEASE, AND OTHER DEMENTIAS.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.) is amended--
            (1) by redesignating the second and third sections 399R as 
        sections 399S and 399T, respectively; and
            (2) by adding at the end the following:

``SEC. 399U. ALZHEIMER'S DISEASE PUBLIC EDUCATION CAMPAIGN.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall directly or 
through grants, cooperative agreements, or contracts to eligible 
entities--
            ``(1) conduct, support, and promote the coordination of 
        research, investigations, demonstrations, training, and studies 
        relating to the control, prevention, and surveillance of the 
        risk factors associated with cognitive health, Alzheimer's 
        disease, and other dementias; and
            ``(2) seek early recognition of, and early intervention in 
        the course of, Alzheimer's disease and other dementias.
    ``(b) Certain Activities.--Activities under subsection (a) shall 
include--
            ``(1) providing support for the dissemination and 
        implementation of the Roadmap to Maintaining Cognitive Health 
        of the Centers for Disease Control and Prevention to 
        effectively mobilize the public health community into action;
            ``(2) the development of coordinated public education 
        programs, services, and demonstrations which are designed to 
        increase general awareness of cognitive function and promote a 
        brain healthy lifestyle;
            ``(3) the development of targeted communication strategies 
        and tools to educate health professionals and service providers 
        about the early recognition, diagnosis, care, and management of 
        Alzheimer's disease and other dementias, and to provide 
        consumers with information about interventions, products, and 
        services that promote cognitive health and assist consumers in 
        maintaining current understanding about cognitive health based 
        on the best science available; and
            ``(4) providing support for the collection, publication, 
        and analysis of data and the prevalence and incidence of 
        cognitive health, Alzheimer's disease, and other dementias, and 
        the evaluation of existing population-based surveillance 
        systems (such as the Behavioral Risk Factors Surveillance 
        Survey (BRFSS) and the National Health Interview Survey (NHIS)) 
        to identify limitations that exist in the area of cognitive 
        health, and if necessary, the development of a surveillance 
        system for cognitive decline, including Alzheimer's disease and 
        other dementias.
    ``(c) Grants.--The Secretary may award grants under this section--
            ``(1) to State and local health agencies for the purpose 
        of--
                    ``(A) coordinating activities related to cognitive 
                health, Alzheimer's disease, and other dementias with 
                existing State-based health programs and community-
                based organizations;
                    ``(B) providing Alzheimer's disease education and 
                training opportunities and programs for health 
                professionals; and
                    ``(C) developing, testing, evaluating, and 
                replicating effective Alzheimer's disease intervention 
                programs to maintain or improve cognitive health; and
            ``(2) to nonprofit private health organizations with 
        expertise in providing care and services to individuals with 
        Alzheimer's disease for the purpose of--
                    ``(A) disseminating information to the public;
                    ``(B) testing model intervention programs to 
                improve cognitive health; and
                    ``(C) coordinating existing services related to 
                cognitive health, Alzheimer's disease, and other 
                dementias with State-based health programs.
    ``(d) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $15,000,000 
for fiscal year 2010, and such sums as may be necessary for each of 
fiscal years 2011 through 2014.''.

                  TITLE III--ASSISTANCE FOR CAREGIVERS

SEC. 301. ALZHEIMER'S CALL CENTER.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.), as amended by section 201, is further amended by adding 
at the end the following:

``SEC. 399V. ALZHEIMER'S CALL CENTER.

    ``(a) In General.--The Secretary, acting through the Administration 
on Aging, shall award a cooperative grant to a non-profit or community-
based organization to support the establishment and operation of an 
Alzheimer's Call Center that is accessible 24 hours a day, 7 days a 
week, at the national and local levels, to provide expert advice, care 
consultation, information, and referrals regarding Alzheimer's disease.
    ``(b) Activities.--The Alzheimer's Call Center established under 
subsection (a) shall--
            ``(1) collaborate with the Administration on Aging in the 
        development, modification, and execution of the Call Center's 
        work plan;
            ``(2) assist the Administration on Aging in developing and 
        sustaining collaborations between the Call Center, the 
        Eldercare Locator of the Administration of Aging, and the 
        grantees under the Alzheimer's disease demonstration program 
        under subpart II of part K;
            ``(3) provide a 24 hours a day, 7 days a week toll-free 
        call center with trained professional staff who are available 
        to provide care consultation and crisis intervention to 
        individuals with Alzheimer's disease and other dementias, their 
        family and informal caregivers, and others as appropriate;
            ``(4) be accessible by telephone through a single toll-free 
        telephone number, website, and e-mail address; and
            ``(5) evaluate the impact of the Call Center's activities 
        and services.
    ``(c) Multilingual Capacity.--The Call Center established under 
this section shall have a multilingual capacity and shall respond to 
inquiries in at least 140 languages through its own bilingual staff and 
with the use of a language translation service.
    ``(d) Response to Emergency and Ongoing Needs.--The Call Center 
established under this section shall collaborate with community-based 
organizations, including non-profit agencies and organizations, to 
ensure local, on-the-ground capacity to respond to emergency and on-
going needs of individuals with Alzheimer's disease and other 
dementias, their families, and informal caregivers.
    ``(e) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $1,000,000 
for fiscal year 2010, and such sums as may be necessary for each of 
fiscal years 2011 through 2014.''.

SEC. 302. INNOVATIVE ALZHEIMER'S CARE STATE MATCHING GRANT PROGRAM.

    (a) Authorization of Appropriations.--Section 398B(e) of the Public 
Health Service Act (42 U.S.C. 280c-5(e)) is amended--
            (1) by striking ``and such'' and inserting ``such''; and
            (2) by inserting before the period the following: ``, 
        $25,000,000 for fiscal year 2010, and such sums as may be 
        necessary for each of fiscal years 2011 through 2014''.
    (b) Program Expansion.--Section 398(a) of the Public Health Service 
Act (42 U.S.C. 280c-3(a)) is amended--
            (1) in paragraph (2), by inserting after ``other respite 
        care'' the following: ``and care consultation, including 
        assessment of needs, assistance with planning and problem 
        solving, and providing supportive listening,'';
            (2) in paragraph (3), by striking ``; and'' and inserting 
        the following: ``, and individuals in frontier areas (in this 
        subsection, defined as areas with 6 or fewer people per square 
        mile or areas in which residents must travel at least 60 
        minutes or 60 miles to receive health care services);'';
            (3) in paragraph (4), by striking the period at the end and 
        inserting a semicolon; and
            (4) by adding at the end the following:
            ``(5) to encourage grantees under this section to 
        coordinate activities with other State officials administering 
        efforts to promote long-term care options that enable older 
        individuals to receive long-term care in home- and community-
        based settings, in a manner responsive to the needs and 
        preferences of older individuals and their family caregivers;
            ``(6) to encourage grantees under this section to--
                    ``(A) engage in activities that support early 
                detection and diagnosis of Alzheimer's disease and 
                other dementias;
                    ``(B) provide training about how Alzheimer's 
                disease can affect behavior and impede communication in 
                medical and community settings to--
                            ``(i) medical personnel, including hospital 
                        staff, emergency room personnel, home health 
                        care workers and physician office staff;
                            ``(ii) rehabilitation services providers; 
                        and
                            ``(iii) caregivers of individuals with 
                        Alzheimer's disease;
                    ``(C) develop guidelines to provide the medical 
                community with up-to-date information about the best 
                methods of care for individuals with Alzheimer's 
                disease;
                    ``(D) inform community physicians about available 
                resources to assist the physician in detecting and 
                managing Alzheimer's disease; and
                    ``(E) raise awareness among community physicians 
                about the availability of community-based organizations 
                which can assist individuals with Alzheimer's disease 
                and their caregivers;
            ``(7) to encourage grantees under this section to engage in 
        activities that use findings from evidence-based research on 
        service models and techniques to support individuals with 
        Alzheimer's disease and their caregivers; and
            ``(8) to encourage grantees under this section to 
        incorporate best practices for effectively serving individuals 
        with Alzheimer's disease in community-based settings into 
        systems initiatives and long-term care activities.''.
                                 <all>