II 110th CONGRESS 2d Session S. 3092 IN THE SENATE OF THE UNITED STATES June 5, 2008 Mr. Menendez (for himself and Ms. Mikulski) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 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.

1.

Short title

This Act may be cited as the Cure and Understanding through Research for Alzheimer's Act of 2008, or the CURA Act of 2008.

2.

Findings

Congress makes the following findings: (1)The incidence and prevalence of Alzheimer’s disease increase with age. Alzheimer’s disease is currently the 7th leading cause of death of all ages in the United States (number 5 for people over 65 years of age), with 5,200,000 Americans living with Alzheimer’s. Currently, 1 in 8 Americans over age 65 has Alzheimer’s. Every 71 seconds, someone develops Alzheimer’s disease, and by 2050, someone will develop this disease every 33 seconds. By 2050, the number of individuals age 65 and over with Alzheimer’s will range from 11,000,000 to 16,000,000 people. It is projected that by 2050, more than 60 percent of people with Alzheimer’s disease will be age 85 or older. (2)The prevalence of Alzheimer’s disease and dementia seem to be higher among people with fewer years of education. People with less than 12 years of education have a 15 percent greater risk of developing dementia than people with 12 to 15 years of education and a 35 percent greater risk of developing dementia than people with more than 15 years of education. (3)Hispanics are the fastest growing population in the United States 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 1,300,000) by 2050. (4)Hispanics may be at a greater risk of developing dementia than other ethnic or racial groups. Hispanics have a 64 percent higher incidence of diabetes than non-Hispanic white Americans, and this 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 Census Bureau reports that 34.1 percent of Hispanics in the United States are uninsured, compared to 10.8 percent for non-Hispanic whites and 15.3 percent for all United States residents. (8)Lack of access to healthcare 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. 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 $148,000,000,000 a year in direct and indirect costs to business, Medicare, and Medicaid (not including private insurance).

3.

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 what is culturally competent care. (b)

Education activities

The Director of the National Institutes of Health shall expand and intensify the efforts of the Institutes— (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.

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 the following: , $25,000,000 for fiscal year 2009, and such sums as may be necessary for each of fiscal years 2010 through 2013.

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 317S the following:

317T.

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 the reduction of vascular risk factors. (2)To encourage the 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 other appropriate entities, including the Alzheimer's Association. (c)

Emphasis

In carrying out this section, the Secretary shall give particular emphasis to education and outreach in Hispanic populations.

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