[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1560 Introduced in House (IH)]







110th CONGRESS
  1st Session
                                H. R. 1560

    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

                             March 19, 2007

  Mr. Markey (for himself and Mr. Smith of New Jersey) 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 
2007''.

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 4,500,000 Americans have Alzheimer's 
        disease and 1 in 10 individuals have a family member with the 
        disease. By 2050, the number of individuals with the disease 
        could range from 13,000,000 to 16,000,000 unless science finds 
        a way to prevent or cure the disease.
            (3) One in 10 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 8 years and as 
        many as 20 once the symptoms of Alzheimer's disease appear.
            (5) The average lifetime cost of care for an individual 
        with Alzheimer's disease is $170,000.
            (6) 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.
            (7) Ninety-five percent of Medicare beneficiaries with 
        Alzheimer's disease have one or more other chronic conditions 
        that are common in the elderly, coronary heart disease (30 
        percent), congestive heart failure (28 percent), diabetes (21 
        percent), and chronic obstructive pulmonary disease (17 
        percent).
            (8) Seven in 10 individuals with Alzheimer's disease live 
        at home. While almost 75 percent of home care is provided by 
        family and friends, the average annual cost of paid care for 
        people with Alzheimer's disease at home is $19,000 per year. 
        Almost all families pay this cost out of pocket.
            (9) 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 $70,000. 
        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.
            (10) In fiscal year 2007, the Federal Government will spend 
        an estimated $642,000,000 on Alzheimer's disease research. If 
        the United States achieves its research goals (preventing the 
        onset of Alzheimer's disease in those at risk and treating and 
        delaying progression of the disease in those who have 
        symptoms), annual Medicare savings would be $51,000,000,000 by 
        2015 and $88,000,000,000 by 2020. Annual Medicaid savings would 
        be $10,000,000,000 in 2015 and $17,000,000,000 by 2020 and the 
        projected number of cases of Alzheimer's disease can be reduced 
        by 40 percent by the middle of the century.
            (11) An analysis by the Montefiore Medical Center and the 
        Albert Einstein College of Medicine estimated that the annual 
        value of the informal care system is $306,000,000,000. Family 
        caregiving comes at enormous physical, emotional, and financial 
        sacrifice, putting the whole system at risk.
            (12) One in 8 Alzheimer's disease caregivers becomes ill or 
        injured as a direct result of caregiving. One in 3 uses 
        medication for problems related to caregiving. Older caregivers 
        are 3 times more likely to become clinically depressed than 
        others in their age group.
            (13) Elderly spouses strained by caregiving are 63 percent 
        more likely to die during a given 4-year period than other 
        spouses their age.
            (14) Almost 3 of 4 caregivers are women. One in 3 has 
        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.
            (15) 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 $1,300,000,000 for 
fiscal year 2008, and such sums as may be necessary for each of fiscal 
years 2009 through 2012.

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 ``(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 existing neuroscience initiative.''.

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;
            ``(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, 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 at-risk individuals.
    ``(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 ``, 
and 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. (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 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 
related disorders and improve patient outcomes.''; and
            (4) in subsection (d) by striking ``(d) the Director'' and 
        inserting ``(c) 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 summit of researchers, representatives of academic 
institutions, Federal and State policymakers, public health 
professionals, and representatives of voluntary health agencies to 
provide a detailed overview of current research activities at the 
National Institutes of Health, as well as to 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) 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 the disease;
            (3) translational research on evidence-based and cost-
        effective best practices in the treatment and prevention of the 
        disease;
            (4) information and education programs for health care 
        professionals and the public relating to the disease;
            (5) priorities among the programs and activities of the 
        various Federal agencies regarding such diseases; and
            (6) challenges and opportunities for scientists, 
        clinicians, patients, and voluntary organizations relating to 
        the disease.
    (c) Report.--Not later than 180 days after the date on which the 
National Summit on Alzheimer's Disease is convened under subsection 
(a), the Director of 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 research, education, and other activities that are 
conducted or supported through the national research institutes.
    (d) 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, 
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 DEMENTIA'S.

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

``SEC. 399R. 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, 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 
seek early recognition and 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 
        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 dementia, 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) provide support for the collection, publication, and 
        analysis of data on 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 
        (BRFFS) 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 
        dementia.
    ``(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 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 2008, and such sums as may be necessary for each of 
fiscal years 2009 through 2012.''.

                  TITLE III--ASSISTANCE FOR CAREGIVERS

SEC. 301. ALZHEIMER'S DISEASE 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. 399S. ALZHEIMER'S DISEASE 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, to provide expert advice, care consultation, information, and 
referrals nationwide at the national and local level 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 Alzheimer's Call Center, 
        the Eldercare Locator, the grantees under the Alzheimer's 
        Demonstration Program, and the Aging Network;
            ``(3) provide a 24-hour 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 1-800 
        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 Alzheimer's patients, 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 2008, and such sums as may be necessary for each of 
fiscal years 2009 through 2012.''.

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 2008, and such sums as may be 
        necessary for each of fiscal years 2009 through 2012''.
    (b) Program Expansion.--Section 398(a) of the Public Health Service 
Act (42 U.S.C. 280c-3(a))
            (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 (as 
        defined as areas with 6 or fewer people per square mile or 
        areas in which it takes people at least 60 minutes or 60 miles 
        to reach a market or service area);'';
            (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 
                related dementia;
                    ``(B) provide training to medical personnel 
                including hospital staff, emergency room personnel, 
                home health care workers and physician office staff, 
                rehabilitation services providers, and caregivers about 
                how Alzheimer's can affect behavior and impede 
                communication in medical and community settings;
                    ``(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 them in detecting and managing 
                Alzheimer's; and
                    ``(E) raise awareness among community physicians 
                about the availability of community-based organizations 
                which can assist individuals with Alzheimer's 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 
        ongoing State systems change and long-term care activities.''.
                                 <all>