I 115th CONGRESS 1st Session H. R. 4256 IN THE HOUSE OF REPRESENTATIVES November 6, 2017 Mr. Guthrie (for himself, Mr. Tonko , Ms. Maxine Waters of California , 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 authorize the expansion of activities related to Alzheimer’s disease, cognitive decline, and brain health under the Alzheimer’s Disease and Healthy Aging Program, and for other purposes.

1. Short title This Act may be cited as the Building Our Largest Dementia Infrastructure for Alzheimer’s Act or the BOLD Infrastructure for Alzheimer’s Act . 2. Findings Congress finds as follows: (1) According to former Surgeon General and Director of the Centers for Disease Control and Prevention, Dr. David Satcher, Alzheimer’s is the most under-recognized threat to public health in the 21st century. . (2) Deaths from Alzheimer’s disease increased 55 percent between 1999 and 2014 in the United States, according to data from the Centers for Disease Control and Prevention. (3) More than 5,000,000 people in the United States are living with Alzheimer’s disease and, without significant efforts to change the current trajectory, as many as 16,000,000 people in the United States will have Alzheimer’s disease by 2050. This explosive growth will cause costs associated with Alzheimer’s disease to increase from an estimated $259,000,000,000 in 2017 to more than $1,100,000,000,000 in 2050 (in 2017 dollars). (4) Among individuals living with Alzheimer’s disease and other dementias, evidence indicates as many as 50 percent have not been diagnosed. Among individuals diagnosed with Alzheimer’s disease, only 33 percent are aware of the diagnosis. Early detection and diagnosis of Alzheimer’s disease and other dementias allow people to access available treatments, build a care team, participate in support services, and enroll in clinical trials. Early detection can help physicians better manage a patient’s comorbid conditions and avoid prescribing medications that may worsen cognition or function. (5) Among individuals living with Alzheimer’s disease and other dementias, 25.3 percent experience a preventable hospitalization, and such preventable hospitalizations cost the Medicare program nearly $2,600,000,000 in 2013. (6) African Americans are about 2 times more likely than White Americans to have Alzheimer’s disease and other dementias. Hispanics are about one and one-half times more likely than White Americans to have Alzheimer’s disease and other dementias. (7) In 2016, 15,900,000 family members and friends provided 18,200,000,000 hours of unpaid care to individuals with Alzheimer’s disease and other dementias, at an economic value of over $230,000,000,000. The physical and emotional impact of caregiving of individuals with Alzheimer’s disease and other dementia resulted in an estimated $10,900,000,000 in increased caregiver health costs in 2016. (8) Strategy 4.B of the National Plan to Address Alzheimer’s Disease: 2017 Update of the Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services is to work with State, Tribal, and local governments to improve coordination and identify model initiatives to advance Alzheimer’s disease awareness and readiness across the Government. . 3. Promotion of public health knowledge and awareness of Alzheimer’s disease, cognitive decline, and brain health under the Alzheimer’s Disease and Healthy Aging Program 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: 399V–7. Promotion of public health knowledge and awareness of Alzheimer’s disease, cognitive decline, and brain health under the Alzheimer’s Disease and Healthy Aging Program (a) Definitions In the section: (1) Alzheimer’s disease The term Alzheimer’s disease means Alzheimer’s disease and related dementias. (2) Indian tribe; tribal organization The terms Indian tribe and tribal organization have the meanings given such terms in section 4 of the Indian Health Care Improvement Act. (b) Expansion of activities under the Alzheimer’s Disease and Healthy Aging Program In addition to activities conducted by the Secretary under the Alzheimer’s Disease and Healthy Aging Program of the Centers for Disease Control and Prevention, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, subject to appropriations under subsection (g), shall award cooperative agreements under subsections (c), (d), and (e). (c) Centers of excellence in public health practice (1) In general The Secretary shall award cooperative agreements to eligible entities for the establishment or support of national or regional centers of excellence in public health practice in Alzheimer’s disease to— (A) advance the education of public health officials of States, of political subdivisions of States, and of Indian tribes or tribal organizations, health care professionals, and the public on Alzheimer’s disease, cognitive decline, brain health, and associated health disparities; (B) advance the efforts of public health officials referred to in subparagraph (A) in applying evidence-based systems change, communications, and programmatic interventions for populations with cognitive impairment, including Alzheimer’s disease, and caregivers for such populations; and (C) expand public-private partnerships engaged in activities related to cognitive impairment and associated health disparities with demonstrated success or innovative programs (as determined by the Secretary). (2) Requirements To be eligible to receive a cooperative agreement under this subsection, an entity shall submit to the Secretary an application containing such agreements and information as the Secretary may require, including an agreement that the center to be established or supported under the cooperative agreement will operate in accordance with the following: (A) The center will examine, evaluate, increase, and promote evidence-based and effective Alzheimer’s disease and caregiving-related interventions for health and social services professionals, underserved populations, families, and the public, after consultation with relevant State and local public health officials, private-sector Alzheimer’s disease researchers, and advocates for individuals with Alzheimer’s disease. (B) The center will prioritize its activities on the following: (i) Expanding efforts to educate State, local, and tribal officials and public health professionals in applying established data and evidence-based best practices to address Alzheimer’s disease. (ii) Supporting public health officials of States, of political subdivisions of States, and of Indian tribes or tribal organizations in implementing the most current version of the Healthy Brain Initiative: Public Health Road Map of the Centers for Disease Control and Prevention. (iii) Supporting early detection and diagnosis of Alzheimer’s disease. (iv) Reducing the risk of potentially avoidable hospitalizations of individuals with Alzheimer’s disease. (v) Reducing the risk of cognitive decline and cognitive impairment, including Alzheimer’s disease. (vi) Enhancing support to meet the needs of caregivers of individuals with Alzheimer’s disease. (vii) Reducing health disparities related to the care and support of individuals with cognitive decline and Alzheimer’s disease. (viii) Supporting care planning and management for individuals with Alzheimer’s disease. (3) Considerations In awarding cooperative agreements under this subsection, the Secretary shall consider, among other factors, whether the entity— (A) has access to rural areas or other underserved populations; (B) is located in an area where the aggregate success rate for applications for National Institutes of Health funding has been historically low; (C) is able to build on an existing infrastructure of service and public health research; (D) has experience with providing care, caregiver support, and research related to Alzheimer's disease; and (E) is integrated into existing local government and public health infrastructures. (4) Distribution of awards In awarding cooperative agreements under this subsection, the Secretary, to the extent practicable, shall ensure equitable distribution of awards based on geographic area, including consideration of rural areas, and the burden of the disease on sub-populations. (d) Cooperative agreements to public health departments (1) In general The Secretary shall award cooperative agreements to health departments of States, of political subdivisions of States, and of Indian tribes and tribal organizations to promote cognitive functioning, address cognitive impairment for individuals living in such communities, help meet the needs of caregivers, and address unique aspects of Alzheimer’s disease, as follows: (A) The Secretary shall award core capacity cooperative agreements to such health departments to support the development and implementation of systems change, communications, and programmatic interventions with respect to Alzheimer’s disease, including activities involving— (i) educating and informing the public based on established public health research and data; (ii) supporting early detection and diagnosis; (iii) reducing the risk of potentially avoidable hospitalizations; (iv) reducing the risk of cognitive decline and cognitive impairment; (v) enhancing support to meet the needs of caregivers; (vi) supporting care planning and management; or (vii) supporting the actions set forth in the most current version of the Healthy Brain Initiative: Public Health Road Map of the Centers for Disease Control and Prevention. (B) The Secretary shall award not less than 5 enhanced activity cooperative agreements to such health departments to carry out activities related to Alzheimer’s disease, including through public-private partnerships with organizations or other agencies, such as large employers, public housing agencies, large health care systems, and parks and recreation departments, that include— (i) expanding implementation of programs described in paragraph (2)(A) to reach larger segments of the population; and (ii) implementing the reports described in subparagraph (A)(vii). (2) Other considerations (A) Preference In awarding cooperative agreements under paragraph (1), the Secretary shall give preference to applications that focus on addressing health disparities, including populations and geographic areas that are most in need of intervention. (B) Clarification on enhanced activity cooperative agreements If the Secretary is unable to identify 5 eligible health departments to receive a cooperative agreement under paragraph (1)(B), the Secretary shall allocate any amounts reserved for such agreements to additional cooperative agreements under paragraph (1)(A). (3) Eligibility To be eligible to receive a cooperative agreement under paragraph (1), a State, political subdivision of a State, Indian tribe, or tribal organization shall prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require, including a plan that describes— (A) how the applicant proposes to develop or expand, programs to educate individuals through partnership engagement, workforce development, guidance and support for programmatic efforts, strategic communication, and evaluation with respect to Alzheimer’s disease, and in the case of a cooperative agreement under paragraph (1)(B), how the applicant proposes to implement the most current version of the Healthy Brain Initiative: Public Health Road Map of the Centers for Disease Control and Prevention; (B) the manner in which the applicant will coordinate with appropriate State and local authorities as well as, in the case of a cooperative agreement under paragraph (1)(B), relevant public and private organizations or agencies; and (C) the manner in which the applicant will evaluate the effectiveness of any program carried out under the cooperative agreement. (4) Use of funds A health department awarded a cooperative agreement under paragraph (1) shall use amounts received under such cooperative agreement to— (A) develop, implement, disseminate, evaluate, and if applicable, expand programs to educate individuals on matters related to Alzheimer’s disease described in paragraph (1)(A); and (B) in the case of a cooperative agreement under paragraph (1)(B), implement the most current version of the Healthy Brain Initiative: Public Health Road Map of the Centers for Disease Control and Prevention and evaluate its implementation. (5) Matching requirement (A) In general Except as may be provided in subparagraph (B), each health department that is awarded a cooperative agreement under paragraph (1) shall provide, from non-Federal sources, an amount equal to 15 percent of the amount provided under such agreement (which may be provided in cash or in-kind) to carry out the activities supported by the cooperative agreement. (B) Waiver authority The Secretary may waive all or part of the matching requirement described in subparagraph (A) for any fiscal year for— (i) a health department, if the Secretary determines that applying such matching requirement to the health department would result in serious hardship or an inability to carry out the purposes of the cooperative agreement awarded to such health department; or (ii) a rural or frontier region. (e) Cooperative agreements for analysis and reporting of data regarding cognitive decline and caregiving (1) In general The Secretary may award cooperative agreements to eligible entities for the following activities: (A) The analysis and timely public reporting of data on the State and national levels regarding cognitive decline, including Alzheimer’s disease, caregiving, and health disparities experienced by individuals with cognitive decline and their caregivers. (B) The monitoring of objectives on dementia, including Alzheimer’s disease, and caregiving in the program of the Secretary regarding health-status goals for 2020 (commonly referred to as the Healthy People 2020 report ), and the development and monitoring of such objectives in future Healthy People reports of the Department of Health and Human Services. (2) Eligibility To be eligible to receive a cooperative agreement under this subsection, an entity shall be a public or nonprofit private entity, including institutions of higher education, and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require. (3) Surveillance The analysis, timely public reporting, and dissemination of data regarding cognitive decline, cognitive impairment, care­giv­ing, and health disparities on the State and national levels under a cooperative agreement under this subsection may be carried out by eligible entities using data sources such as the following: (A) The Behavioral Risk Factor Surveillance System. (B) The National Health and Nutrition Examination Survey. (C) The National Health Interview Survey. (f) Data collection The Secretary shall collect data on cognitive decline, cognitive impairment, care­giv­ing, and health disparities on the State and national levels, using the surveillance systems described in subparagraphs (A) through (C) of subsection (e)(3). (g) Nonduplication of effort The Secretary shall ensure that activities under any cooperative agreement awarded under this section do not unnecessarily duplicate efforts of other agencies and offices within the Department of Health and Human Services related to— (1) activities of centers of excellence in public health practice with respect to Alzheimer’s disease described in subsection (c); (2) activities of public health departments with respect to Alzheimer’s disease described in subsection (d); or (3) the analysis and public reporting of surveillance data on cognitive decline, caregiving, and health disparities of individuals with Alzheimer’s disease under subsection (e). (h) Authorization of appropriations For each of fiscal years 2018 through 2025, there are authorized to be appropriated $12,000,000 for purposes of carrying out subsection (c), $20,000,000 for purposes of carrying out subsection (d), and $5,000,000 for purposes of carrying out subsections (e) and (f). Funds appropriated under this subsection shall remain available until expended. .