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[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2987 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 2987

 To amend the Public Health Service Act to ensure sufficient resources 
and increase efforts for research at the National Institutes of Health 
relating to Alzheimer's disease, to authorize an education and outreach 
program to promote public awareness and risk reduction with respect to 
Alzheimer's disease (with particular emphasis on education and outreach 
           in Hispanic populations), and for other purposes.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                             June 19, 2009

   Ms. Linda T. Sanchez of California (for herself, Ms. Berkley, Mr. 
    Bishop of Georgia, Ms. Bordallo, Mr. Brady of Pennsylvania, Mr. 
 Grijalva, Mr. Holt, Ms. Kaptur, Ms. Lee of California, Mr. McGovern, 
Mr. Nadler of New York, Mrs. Napolitano, Mr. Payne, Mr. Pierluisi, Mr. 
Reyes, Ms. Ros-Lehtinen, Mr. Ryan of Ohio, Mr. Serrano, Mr. Sires, Ms. 
 Waters, Mr. Wexler, and Mr. Wu) introduced the following bill; which 
          was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL

 
 To amend the Public Health Service Act to ensure sufficient resources 
and increase efforts for research at the National Institutes of Health 
relating to Alzheimer's disease, to authorize an education and outreach 
program to promote public awareness and risk reduction with respect to 
Alzheimer's disease (with particular emphasis on education and outreach 
           in Hispanic populations), and for other purposes.

    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 ``Cure and Understanding through 
Research for Alzheimer's Act of 2009'' or the ``La Cura Act of 2009''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Alzheimer's disease is the seventh leading cause of 
        death of all ages in the United States (and the fifth leading 
        cause of death for people over 65 years of age), with 5.2 
        million individuals in the United States living with 
        Alzheimer's disease. Currently, one of each eight individuals 
        in the United States over age 65 has Alzheimer's disease. Every 
        71 seconds, an individual in the United States develops 
        Alzheimer's disease, and by 2050, every 33 seconds an 
        individual in the United States will develop this disease. By 
        2050, the number of individuals in the United States age 65 and 
        over with Alzheimer's disease will range from 11 million to 16 
        million individuals.
            (2) The prevalence of Alzheimer's disease and dementia 
        seems to be higher among individuals with fewer years of 
        education. Individuals with fewer than 12 years of education 
        have a 15 percent greater risk of developing dementia than 
        individuals with 12 to 15 years of education and a 35 percent 
        greater risk of developing dementia than individuals with more 
        than 15 years of education.
            (3) Hispanics are the fastest growing population in the 
        Nation and by 2050, will have a life expectancy of 87 years, 
        longer than any other ethnic or racial group. The Hispanic 
        community in the United States is projected to experience a 
        six-fold increase in Alzheimer's disease (from fewer than 
        200,000 to as many as 1.3 million) by 2050.
            (4) Hispanics may be at a greater risk of developing 
        dementia than other ethnic or racial groups: Hispanics' 64-
        percent higher incidence of diabetes than non-Hispanic White 
        Americans is of particular concern in light of new findings 
        that diabetes is the one vascular risk factor that, in the 
        absence of stroke, is related to an increased risk of 
        Alzheimer's disease.
            (5) Research on disparities in Alzheimer's risk factors 
        between Hispanic and other ethnic and racial groups is only 
        beginning to sort out complex differences: for example, even in 
        the absence of the APOE-e4 allele, the one known genetic risk 
        factor for late onset Alzheimer's, Caribbean Hispanics have a 
        cumulative risk for Alzheimer's twice that of non-Hispanic 
        Whites.
            (6) The shortage of bilingual health professionals, 
        combined with the large population of monolingual Spanish-
        speaking seniors, makes adequate testing and diagnosis of 
        Alzheimer's among elderly Hispanics difficult and may lead to 
        cultural biases in cognitive testing. Moreover, inadequate 
        translation of diagnostic tools can lead to improper diagnoses, 
        and there may be poor understanding of recommended treatment 
        and self-care even among those who are properly diagnosed.
            (7) Hispanics are far more likely to be uninsured than any 
        other ethnic group: the Bureau of the Census reports that 34.1 
        percent of the Hispanic population in the United States is 
        uninsured, compared to 10.8 percent for non-Hispanic Whites and 
        15.3 percent for all United States residents.
            (8) Lack of access to health care and a strong cultural 
        commitment to caring for one's elders within the family are 
        among the factors that make Hispanics with dementia less likely 
        than non-Hispanics to see a physician and use related services 
        provided by formal health professionals. Hispanic caregivers 
        surveyed were significantly more likely (33 percent) than 
        caregivers of other races (23 percent) to believe that 
        Alzheimer's disease is a normal part of the aging process and 
        were also significantly more likely (67 percent) to dismiss the 
        symptoms of Alzheimer's disease as old age than other 
        respondents of other races (53 percent). Delays in diagnosis 
        and lack of early and consistent treatment can lead to higher 
        levels of impairment and increased stress on family caregivers.
            (9) Hispanic elders are second most likely, after Asian-
        Americans, to live with their families rather than in long-term 
        care facilities. More research is needed to better understand 
        the effects of differing care settings on family caregivers and 
        Alzheimer's patients.
            (10) Alzheimer's disease costs the United States $148 
        billion each year in direct and indirect costs to business, the 
        Medicare program, and the Medicaid program (not including 
        private health insurance costs). If the prevalence of 
        Alzheimer's disease continues to increase as expected, the $91 
        billion spent in 2005 on Medicare costs for care of individuals 
        with Alzheimer's disease and dementia patients is projected to 
        increase to $189 billion by 2015.

SEC. 3. NIH RESEARCH AND EDUCATION ON ALZHEIMER'S DISEASE.

    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 
new section:

``SEC. 445J. NIH RESEARCH AND EDUCATION ON ALZHEIMER'S DISEASE.

    ``(a) Research Activities.--In conducting research relating to 
Alzheimer's disease, the Director of the National Institutes of Health 
shall ensure sufficient resources for activities relating to 
Alzheimer's disease and Hispanic communities, including by--
            ``(1) increasing efforts in epidemiological work in 
        Hispanic subgroups;
            ``(2) allocating resources to the National Institute on 
        Aging Alzheimer's disease research centers and other academic 
        centers involved in Alzheimer's disease research to increase 
        participation of Hispanics and other underrepresented ethnic 
        groups in research and clinical trials in sufficient numbers to 
        draw valid conclusions; and
            ``(3) conducting social, behavioral, and health services 
        research--
                    ``(A) to understand more fully the underlying 
                reasons that Hispanic individuals delay diagnosis and 
                underutilize services;
                    ``(B) to identify culturally and linguistically 
                appropriate approaches for addressing such delays and 
                underutilization; and
                    ``(C) to identify approaches for providing, and 
                improving the quality of, culturally competent care.
    ``(b) Education Activities.--The Director of the National 
Institutes of Health shall expand and intensify efforts of the National 
Institutes of Health--
            ``(1) to educate communities about the importance of 
        research relating to Alzheimer's disease; and
            ``(2) to respond effectively to cultural concerns about 
        participation in such research, especially with respect to 
        sensitive matters like the collection of brain tissue and 
        genetic information.''.

SEC. 4. INCREASED FUNDING FOR ALZHEIMER'S DISEASE DEMONSTRATION GRANTS.

    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 at the end ``, 
        $25,000,000 for fiscal year 2010, and such sums as may be 
        necessary for each of the fiscal years 2011 through 2014''.

SEC. 5. CDC OUTREACH AND EDUCATION.

    Part B of title III of the Public Health Service Act (42 U.S.C. 243 
et seq.) is amended by inserting after section 317T the following:

``SEC. 317U. EDUCATION AND OUTREACH ON ALZHEIMER'S DISEASE.

    ``(a) Purposes.--The purposes of this section are the following:
            ``(1) To reduce the risk of Alzheimer's disease through 
        reduction of vascular risk factors.
            ``(2) To encourage early recognition and diagnosis of 
        dementia.
            ``(3) To train public health personnel to recognize, 
        assess, diagnose, and treat Alzheimer's disease in ways that 
        are culturally appropriate and supportive of families.
    ``(b) Education and Outreach.--To achieve the purposes of this 
section, the Secretary, acting through the Centers for Disease Control 
and Prevention, shall conduct an aggressive, evidence-based education 
and outreach program to promote public awareness and risk reduction 
with respect to Alzheimer's disease. In conducting the outreach 
program, the Secretary shall consult with State Health Departments and 
may consult with other appropriate entities, including the Alzheimer's 
Association and the Alzheimer's Foundation of America.
    ``(c) Emphasis.--In carrying out this section, the Secretary shall 
give particular emphasis to education and outreach in Hispanic 
populations.''.
                                 <all>
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