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S. 2534 (is) To suspend temporarily the duty on Pigment Yellow 168. [Introduced in Senate] ...

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  2d Session
                                S. 2533

    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.



                             June 16, 2004

    Ms. Mikulski (for herself, Mr. Bond, Mr. Graham of Florida, Mr. 
   Grassley, Mr. Daschle, Mr. Warner, Mrs. Clinton, Ms. Collins, Mr. 
  Kennedy, Mr. Alexander, Mr. Breaux, Mr. DeWine, Mr. Lautenberg, Mr. 
Roberts, Mr. Corzine, Mr. Talent, Mr. Sarbanes, Mr. Allen, Mr. Durbin, 
 Mr. Hagel, Mr. Kerry, Mrs. Dole, Mr. Carper, Mr. Smith, Mr. Nelson of 
  Nebraska, Mr. Coleman, Mr. Edwards, Ms. Murkowski, Mr. Dayton, Mr. 
Domenici, Mrs. Murray, Mr. Hatch, Mr. Schumer, Mr. Hollings, Mr. Bayh, 
 Mr. Rockefeller, Ms. Landrieu, Mr. Dodd, Mrs. Lincoln, Ms. Stabenow, 
Mr. Wyden, Mr. Johnson, and Mr. Harkin) introduced the following bill; 
     which was read twice and referred to the Committee on Finance


                                 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,


    (a) Short Title.--This Act may be cited as the ``Ronald Reagan 
Alzheimer's Breakthrough Act of 2004''.
    (b) Table of Contents.--The table of contents of this Act is as 

Sec. 1. Short title; table of contents.
Sec. 2. Findings.

Sec. 101. Doubling NIH funding for Alzheimer's disease research.
Sec. 102. Priority to Alzheimer's disease research.
Sec. 103. Alzheimer's disease prevention initiative.
Sec. 104. Alzheimer's disease clinical research.
Sec. 105. Research on Alzheimer's disease caregiving.
Sec. 106. National summit on Alzheimer's disease.

Sec. 201. Public education campaign.

Sec. 301. Increased funding for National Family Caregiver Support 
Sec. 302. Alzheimer's disease demonstration grants.
Sec. 303. Safe return program.
Sec. 304. Lifespan respite care.
Sec. 305. Credit for taxpayers with long-term care needs.
Sec. 306. Treatment of premiums on qualified long-term care insurance 
Sec. 307. Additional consumer protections for long-term care insurance.


    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 people 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. A person 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 2000, medicare alone spent $31,900,000,000 for the 
        care of individuals with Alzheimer's disease and this amount is 
        projected to increase to $49,300,000,000 in 2010.
            (7) Forty-nine percent of medicare beneficiaries who have 
        Alzheimer's disease also receive medicaid. Of the total 
        population dually eligible for medicare and medicaid, 22 
        percent have Alzheimer's disease.
            (8) Seven in 10 people 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 $12,500 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 nearly $64,000. 
        Medicaid pays nearly 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 $18,200,000,000 in 2000 
        to $33,000,000,000 in 2010.
            (10) In fiscal year 2004, the Federal Government will spend 
        an estimated $680,000,000 on Alzheimer's disease research. If 
        our Nation 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), the 
        projected number of cases of Alzheimer's disease can be reduced 
        by more than one-third by the middle of the century. The number 
        of baby boomers with moderate to severe Alzheimer's disease can 
        be reduced by 60 percent.
            (11) A study commissioned by the United Hospital Fund 
        estimated that the annual value of this informal care system is 
        $257,000,000,000. Family caregiving comes at enormous physical, 
        emotional, and financial sacrifice, putting the whole system at 
            (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.



    (a) In General.--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 is authorized to be appropriated 
$1,400,000,000 for fiscal year 2005, and such sums as may be necessary 
for each of fiscal years 2006 through 2009.
    (b) Aging Process Regarding Women.--Section 445H(b) of the Public 
Health Service Act (42 U.S.C. 285e-10(b)) is amended by striking 
``2003'' and inserting ``2009''.
    (c) Clinical Research and Training Awards.--Section 445I(d) of the 
Public Health Service Act (42 U.S.C. 285e-10a(d)) is amended by 
striking ``2005'' and inserting ``2009''.


     Section 443 of the Public Health Service Act (42 U.S.C. 285e) is 
            (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 under this subpart, give priority to 
conducting and supporting Alzheimer's disease research.''.


    Section 444 of the Public Health Service Act (42 U.S.C. 285e-1) is 
            (1) in subsection (d), by inserting ``and training'' after 
        ``conduct research''; and
            (2) by adding at the end the following:
    ``(e) The Director of the National Institutes of Health shall, in 
collaboration with the Director of the Institute, the directors of 
other relevant institutes, and with volunteer organizations and other 
stakeholders, undertake an Alzheimer's Disease Prevention Initiative 
            ``(1) accelerate the discovery of new risk and protective 
        factors for Alzheimer's disease;
            ``(2) rapidly identify candidate diagnostics, therapies, or 
        preventive interventions or agents for clinical investigation 
        and trials relating to Alzheimer's disease;
            ``(3) support or undertake such investigations and trials; 
            ``(4) implement effective prevention and treatment 
        strategies, including strategies to improve patient care and 
        alleviate caregiver burdens relating to Alzheimer's disease.''.


    (a) Clinical Research.--Section 445F of the Public Health Service 
Act (42 U.S.C. 285e-8) is amended to read as follows:


    ``(a) In General.--The Director of the Institute, pursuant to 
subsections (d) and (e) of section 444, 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 
            ``(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; and
            ``(6) 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 and diagnosis 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 
    ``(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) 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 


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


    ``(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 


    (a) In General.--Not later than 1 year after the date of enactment 
of this Act, 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 

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