[House Report 118-526]
[From the U.S. Government Publishing Office]


118th Congress    }                                     {       Report
                        HOUSE OF REPRESENTATIVES
 2d Session       }                                     {      118-526

======================================================================



 
                        NAPA REAUTHORIZATION ACT

                                _______
                                

  May 24, 2024.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

Mrs. Rodgers of Washington, from the Committee on Energy and Commerce, 
                        submitted the following

                              R E P O R T

                        [To accompany H.R. 619]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 619) to extend the National Alzheimer's Project, 
having considered the same, reports favorably thereon with an 
amendment and recommends that the bill as amended do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     3
Background and Need for Legislation..............................     3
Committee Action.................................................     3
Committee Votes..................................................     4
Oversight Findings and Recommendations...........................     6
New Budget Authority, Entitlement Authority, and Tax Expenditures     6
Congressional Budget Office Estimate.............................     6
Federal Mandates Statement.......................................     6
Statement of General Performance Goals and Objectives............     6
Duplication of Federal Programs..................................     6
Related Committee and Subcommittee Hearings......................     6
Committee Cost Estimate..........................................     7
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     7
Advisory Committee Statement.....................................     7
Applicability to Legislative Branch..............................     7
Section-by-Section Analysis of the Legislation...................     7
Changes in Existing Law Made by the Bill, as Reported............     7

    The amendment is as follows:
  Strike all after the enacting clause and insert the 
following:

SECTION 1. SHORT TITLE.

  This Act may be cited as the ``NAPA Reauthorization Act''.

SEC. 2. EXTENSION OF NATIONAL ALZHEIMER'S PROJECT.

  (a) Purpose of Project.--Section 2(c) of the National Alzheimer's 
Project Act (42 U.S.C. 11225(c)) is amended--
          (1) in paragraph (2), by striking ``and coordination of'' and 
        inserting ``on, and coordination of,'';
          (2) in paragraph (4)--
                  (A) by redesignating subparagraphs (A) and (B) as 
                subparagraphs (B) and (C), respectively; and
                  (B) by inserting before subparagraph (B), as so 
                redesignated, the following:
                  ``(A) promotion of healthy aging and reduction and 
                mitigation of risk factors for Alzheimer's;'';
          (3) in paragraph (5)--
                  (A) by inserting ``and other underserved populations, 
                including individuals with developmental disabilities 
                such as Down syndrome,'' after ``populations''; and
                  (B) by striking ``; and'' and inserting a semicolon;
          (4) by redesignating paragraph (6) as paragraph (7); and
          (5) by inserting after paragraph (5) the following:
          ``(6) provide information on, and promote the adoption of, 
        healthy behaviors that may reduce the risk of cognitive decline 
        and promote and protect cognitive health; and''.
  (b) National Plan.--Section 2(d)(2) of the National Alzheimer's 
Project Act (42 U.S.C. 11225(d)(2)) is amended--
          (1) by inserting ``, across public and private sectors,'' 
        after ``Nation's progress''; and
          (2) by inserting ``, including consideration of public-
        private collaborations, as appropriate'' before the period at 
        the end.
  (c) Advisory Council.--Section 2(e) of the National Alzheimer's 
Project Act (42 U.S.C. 11225(e)) is amended--
          (1) in paragraph (2)--
                  (A) in subparagraph (A), by adding at the end the 
                following:
                          ``(xi) A designee of the Department of 
                        Justice.
                          ``(xii) A designee of the Social Security 
                        Administration.
                          ``(xiii) A designee of the Federal Emergency 
                        Management Agency.
                          ``(xiv) 2 or more other designees of the 
                        Department of Health and Human Services, at 
                        least one of whom has expertise in risk factors 
                        associated with the development or the 
                        progression of Alzheimer's disease, as 
                        determined by the Secretary of Health and Human 
                        Services.''; and
                  (B) in subparagraph (B)--
                          (i) in the matter preceding clause (i), by 
                        striking ``12'' and inserting ``14'';
                          (ii) in clause (v)--
                                  (I) by striking ``2 researchers'' and 
                                inserting ``3 researchers''; and
                                  (II) by striking ``; and'' and 
                                inserting ``, including at least one 
                                researcher with demonstrated experience 
                                in recruitment and retention of 
                                underrepresented groups into research 
                                or clinical trials related to 
                                dementia;'';
                          (iii) in clause (vi), by striking the period 
                        at the end and inserting ``; and''; and
                          (iv) by adding at the end the following:
                          ``(vii) 1 individual with a diagnosis of 
                        Alzheimer's disease.'';
          (2) in paragraph (5)--
                  (A) in subparagraph (A)--
                          (i) by striking ``an initial evaluation'' and 
                        inserting ``annual evaluations''; and
                          (ii) by striking ``research, clinical'' and 
                        inserting ``research, risk reduction, public 
                        health, clinical'';
                  (B) in subparagraph (B), by striking ``initial'' and 
                inserting ``annual'';
                  (C) in subparagraph (C)--
                          (i) in the matter preceding clause (i), by 
                        striking ``initial'' and inserting ``annual''; 
                        and
                          (ii) in clause (ii), by inserting ``and 
                        reduce disparities'' before the semicolon at 
                        the end; and
                  (D) in subparagraph (D), by striking ``annually 
                thereafter, an evaluation'' and inserting ``annual 
                evaluations''; and
          (3) in paragraph (6), by striking ``2025'' and inserting 
        ``2035''.
  (d) Annual Report.--Section 2(g) of the National Alzheimer's Project 
Act (42 U.S.C. 11225(g)) is amended--
          (1) in paragraph (1)--
                  (A) by striking ``that includes an evaluation'' and 
                inserting the following: ``that includes--
                  ``(A) an evaluation'';
                  (B) in subparagraph (A) (as so designated), by adding 
                ``and'' at the end; and
                  (C) by adding at the end the following:
                  ``(B) a summary of the Secretary's process for 
                identifying and updating what conditions constitute 
                Alzheimer's disease;''; and
          (2) in paragraph (3)(A)(ii), by inserting ``and reduce 
        disparities'' before the semicolon at the end.
  (e) Sunset.--Section 2(h) of the National Alzheimer's Project Act (42 
U.S.C. 11225(h)) is amended by striking ``2025'' and inserting 
``2035''.

                          Purpose and Summary

    H.R. 619 reauthorizes the National Alzheimer's Project 
through 2035, while making changes to the project to support 
efforts to address Alzheimer's disease and related dementias. 
This bill promotes healthy aging by reducing risk factors 
associated with cognitive decline. In addition, this bill 
expands membership of the Advisory Council on Alzheimer's 
Research, Care, and Services to include individuals diagnosed 
with Alzheimer's disease, researchers with specific clinical 
trial experience, and representatives from certain federal 
agencies.

                  Background and Need for Legislation

    The NAPA Reauthorization Act maintains the framework for 
the national strategic plan to prevent and treat Alzheimer's 
disease, while including key provisions that seek to improve 
the support that patients and caregivers receive. About 1 in 9 
people aged 65 and older (10.7 percent) has Alzheimer's, and 1 
in 3 seniors dies with Alzheimer's or another dementia.\1\ 
Sixty percent of health care workers believe the U.S. health 
care system is not effectively helping patients and their 
families navigate dementia care.\2\
---------------------------------------------------------------------------
    \1\Alzheimer's Association, ``Alzheimer's Disease Facts and 
Figures'', 2024. https://www.alz.org/alzheimers-dementia/facts-figures.
    \2\Id.
---------------------------------------------------------------------------

                            Committee Action

    On February 14, 2024, the Subcommittee on Health held a 
hearing on H.R. 619. The title of the hearing was ``Legislative 
Proposals to Support Patients and Caregivers.'' The 
Subcommittee received testimony from:
           Andy Shih, Ph.D., Chief Science Officer, 
        Autism Speaks;
           Corey Feist, J.D., M.B.A., Co-Founder and 
        CEO, Dr. Lorna Breen Heroes' Foundation;
           Joanne Pike, DrPH, President and CEO, 
        Alzheimer's Association;
           Gordon Tomaselli, M.D., Former President, 
        American Heart Association; Marilyn and Stanley M. Katz 
        Dean, Emeritus and Professor of Medicine, Albert 
        Einstein College of Medicine; Adjunct Professor of 
        Medicine, Johns Hopkins University School of Medicine;
           Michelle Whitten, President, CEO, and Co-
        Founder, Global Down Syndrome Foundation;
           Randy Strozyk, President, American Ambulance 
        Association; and
           Christina Annunziata, M.D., Ph.D., Senior 
        Vice President of Extramural Discovery Science, 
        American Cancer Society.
    On March 12, 2024, the Subcommittee on Health met in open 
markup session and forwarded H.R. 619, as amended, to the full 
Committee by a record vote of 26 yeas and 0 nays.
    On March 20, 2024, the full Committee on Energy and 
Commerce met in open markup session and ordered H.R. 619, as 
amended, favorably reported to the House by a record vote of 43 
yeas and 0 nays.

                            Committee Votes

    Clause 3(b) of rule XIII requires the Committee to list the 
record votes on the motion to report legislation and amendments 
thereto. The following reflects the record votes taken during 
the Committee consideration:

    [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

                 Oversight Findings and Recommendations

    Pursuant to clause 2(b)(1) of rule X and clause 3(c)(1) of 
rule XIII, the Committee held a hearing and made findings that 
are reflected in this report.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    Pursuant to clause 3(c)(2) of rule XIII, the Committee 
finds that H.R. 619 would result in no new or increased budget 
authority, entitlement authority, or tax expenditures or 
revenues.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII, at the time this 
report was filed, the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974 was not available.

                       Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

         Statement of General Performance Goals and Objectives

    Pursuant to clause 3(c)(4) of rule XIII, the general 
performance goal or objective of this legislation is to 
reauthorize the National Alzheimer's Project though 2035 and to 
make certain modifications to the Project structure, including 
the Project's purpose and the composition of the Advisory 
Council on Alzheimer's Research, Care and Services by expanding 
the membership and its reporting requirements.

                    Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 619 is known to be duplicative of another Federal program, 
including any program that was included in a report to Congress 
pursuant to section 21 of Public Law 111-139 or the most recent 
Catalog of Federal Domestic Assistance.

              Related Committee and Subcommittee Hearings

    Pursuant to clause 3(c)(6) of rule XIII, the following 
related hearing was used to develop or consider H.R. 619:
           On February 14, 2024, the Subcommittee on 
        Health held a hearing on H.R. 619. The title of the 
        hearing was ``Legislative Proposals to Support Patients 
        and Caregivers.'' The Subcommittee received testimony 
        from:
                   Andy Shih, PhD, Chief Science 
                Officer, Autism Speaks;
                   Corey Feist, JD, MBA, Co-Founder 
                and CEO, Dr. Lorna Breen Heroes' Foundation;
                   Joanne Pike, DrPH, President and 
                CEO, Alzheimer's Association;
                   Gordon Tomaselli, MD, Former 
                President, American Heart Association; Marilyn 
                and Stanley M. Katz Dean, Emeritus and 
                Professor of Medicine, Albert Einstein College 
                of Medicine; Adjunct Professor of Medicine, 
                Johns Hopkins University School of Medicine;
                   Michelle Whitten, President, 
                CEO, and Co-Founder, Global Down Syndrome 
                Foundation;
                   Randy Strozyk, President, 
                American Ambulance Association; and
                   Christina Annunziata, MD, PhD, 
                Senior Vice President of Extramural Discovery 
                Science, American Cancer Society.

                        Committee Cost Estimate

    Pursuant to clause 3(d)(1) of rule XIII, the Committee 
adopts as its own the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974. At the time this report was 
filed, the estimate was not available.

       Earmark, Limited Tax Benefits, and Limited Tariff Benefits

    Pursuant to clause 9(e), 9(f), and 9(g) of rule XXI, the 
Committee finds that H.R. 619 contains no earmarks, limited tax 
benefits, or limited tariff benefits.

                      Advisory Committee Statement

    No advisory committees within the meaning of section 5(b) 
of the Federal Advisory Committee Act were created by this 
legislation.

                  Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 provides that the Act may be cited as the ``NAPA 
Reauthorization Act''.

Section 2. Extension of National Alzheimer's Project

    Section 2 amends Section 2 of the National Alzheimer's 
Project Act by extending the program through 2035, as well as 
including preventative approaches within the purpose of the 
project and making certain modifications to the Advisory 
Council on Alzheimer's Research, Care, and Services.

         Changes in Existing Law Made by the Bill, as Reported

    In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (existing law 
proposed to be omitted is enclosed in black brackets, new 
matter is printed in italics, and existing law in which no 
change is proposed is shown in roman):

                    NATIONAL ALZHEIMER'S PROJECT ACT




           *       *       *       *       *       *       *
SEC. 2. THE NATIONAL ALZHEIMER'S PROJECT.

  (a) Definition of Alzheimer's.--In this Act, the term 
``Alzheimer's'' means Alzheimer's disease and related 
dementias.
  (b) Establishment.--There is established in the Office of the 
Secretary of Health and Human Services the National Alzheimer's 
Project (referred to in this Act as the ``Project'').
  (c) Purpose of the Project.--The Secretary of Health and 
Human Services, or the Secretary's designee, shall--
          (1) be responsible for the creation and maintenance 
        of an integrated national plan to overcome Alzheimer's;
          (2) provide information [and coordination of] on, and 
        coordination of, Alzheimer's research and services 
        across all Federal agencies;
          (3) accelerate the development of treatments that 
        would prevent, halt, or reverse the course of 
        Alzheimer's;
          (4) improve the--
                  (A) promotion of healthy aging and reduction 
                and mitigation of risk factors for Alzheimer's;
                  [(A)] (B) early diagnosis of Alzheimer's 
                disease; and
                  [(B)] (C) coordination of the care and 
                treatment of citizens with Alzheimer's;
          (5) ensure the inclusion of ethnic and racial 
        populations and other underserved populations, 
        including individuals with developmental disabilities 
        such as Down syndrome, at higher risk for Alzheimer's 
        or least likely to receive care, in clinical, research, 
        and service efforts with the purpose of decreasing 
        health disparities in Alzheimer's[; and];
          (6) provide information on, and promote the adoption 
        of, healthy behaviors that may reduce the risk of 
        cognitive decline and promote and protect cognitive 
        health; and
          [(6)] (7) coordinate with international bodies to 
        integrate and inform the fight against Alzheimer's 
        globally.
  (d) Duties of the Secretary.--
          (1) In general.--The Secretary of Health and Human 
        Services, or the Secretary's designee, shall--
                  (A) oversee the creation and updating of the 
                national plan described in paragraph (2); and
                  (B) use discretionary authority to evaluate 
                all Federal programs around Alzheimer's, 
                including budget requests and approvals.
          (2) National plan.--The Secretary of Health and Human 
        Services, or the Secretary's designee, shall carry out 
        an annual assessment of the Nation's progress, across 
        public and private sectors, in preparing for the 
        escalating burden of Alzheimer's, including both 
        implementation steps and recommendations for priority 
        actions based on the assessment, including 
        consideration of public-private collaborations, as 
        appropriate.
  (e) Advisory Council.--
          (1) In general.--There is established an Advisory 
        Council on Alzheimer's Research, Care, and Services 
        (referred to in this Act as the ``Advisory Council'').
          (2) Membership.--
                  (A) Federal members.--The Advisory Council 
                shall be comprised of the following experts:
                          (i) A designee of the Centers for 
                        Disease Control and Prevention.
                          (ii) A designee of the Administration 
                        on Aging.
                          (iii) A designee of the Centers for 
                        Medicare & Medicaid Services.
                          (iv) A designee of the Indian Health 
                        Service.
                          (v) A designee of the Office of the 
                        Director of the National Institutes of 
                        Health.
                          (vi) The Surgeon General.
                          (vii) A designee of the National 
                        Science Foundation.
                          (viii) A designee of the Department 
                        of Veterans Affairs.
                          (ix) A designee of the Food and Drug 
                        Administration.
                          (x) A designee of the Agency for 
                        Healthcare Research and Quality.
                          (xi) A designee of the Department of 
                        Justice.
                          (xii) A designee of the Social 
                        Security Administration.
                          (xiii) A designee of the Federal 
                        Emergency Management Agency.
                          (xiv) 2 or more other designees of 
                        the Department of Health and Human 
                        Services, at least one of whom has 
                        expertise in risk factors associated 
                        with the development or the progression 
                        of Alzheimer's disease, as determined 
                        by the Secretary of Health and Human 
                        Services.
                  (B) Non-federal members.--In addition to the 
                members outlined in subparagraph (A), the 
                Advisory Council shall include [12] 14 expert 
                members from outside the Federal Government, 
                which shall include--
                          (i) 2 Alzheimer's patient advocates;
                          (ii) 2 Alzheimer's caregivers;
                          (iii) 2 health care providers;
                          (iv) 2 representatives of State 
                        health departments;
                          (v) [2 researchers] 3 researchers 
                        with Alzheimer's-related expertise in 
                        basic, translational, clinical, or drug 
                        development science[; and], including 
                        at least one researcher with 
                        demonstrated experience in recruitment 
                        and retention of underrepresented 
                        groups into research or clinical trials 
                        related to dementia;
                          (vi) 2 voluntary health association 
                        representatives, including a national 
                        Alzheimer's disease organization that 
                        has demonstrated experience in 
                        research, care, and patient services, 
                        and a State-based advocacy organization 
                        that provides services to families and 
                        professionals, including information 
                        and referral, support groups, care 
                        consultation, education, and safety 
                        services[.]; and
                          (vii) 1 individual with a diagnosis 
                        of Alzheimer's disease.
          (3) Meetings.--The Advisory Council shall meet 
        quarterly and such meetings shall be open to the 
        public.
          (4) Advice.--The Advisory Council shall advise the 
        Secretary of Health and Human Services, or the 
        Secretary's designee.
          (5) Annual Report.--The Advisory Council shall 
        provide to the Secretary of Health and Human Services, 
        or the Secretary's designee and Congress--
                  (A) [an initial evaluation] annual 
                evaluations of all federally funded efforts in 
                Alzheimer's [research, clinical] research, risk 
                reduction, public health, clinical care, and 
                institutional-, home-, and community-based 
                programs and their outcomes;
                  (B) [initial] annual recommendations for 
                priority actions to expand, eliminate, 
                coordinate, or condense programs based on the 
                program's performance, mission, and purpose;
                  (C) [initial] annual recommendations to--
                          (i) reduce the financial impact of 
                        Alzheimer's on--
                                  (I) Medicare and other 
                                federally funded programs; and
                                  (II) families living with 
                                Alzheimer's disease; and
                          (ii) improve health outcomes and 
                        reduce disparities; and
                  (D) [annually thereafter, an evaluation] 
                annual evaluations of the implementation, 
                including outcomes, of the recommendations, 
                including priorities if necessary, through an 
                updated national plan under subsection (d)(2).
          (6) Termination.--The Advisory Council shall 
        terminate on December 31, [2025] 2035.
  (f) Data Sharing.--Agencies both within the Department of 
Health and Human Services and outside of the Department that 
have data relating to Alzheimer's shall share such data with 
the Secretary of Health and Human Services, or the Secretary's 
designee, to enable the Secretary, or the Secretary's designee, 
to complete the report described in subsection (g).
  (g) Annual report.--The Secretary of Health and Human 
Services, or the Secretary's designee, shall submit to 
Congress--
          (1) an annual report [that includes an evaluation] 
        that includes--
                  (A) an evaluation  of all federally funded 
                efforts in Alzheimer's research, clinical care, 
                and institutional-, home-, and community-based 
                programs and their outcomes; and
                  (B) a summary of the Secretary's process for 
                identifying and updating what conditions 
                constitute Alzheimer's disease;
          (2) an evaluation of all federally funded programs 
        based on program performance, mission, and purpose 
        related to Alzheimer's disease;
          (3) recommendations for--
                  (A) priority actions based on the evaluation 
                conducted by the Secretary and the Advisory 
                Council to--
                          (i) reduce the financial impact of 
                        Alzheimer's on--
                                  (I) Medicare and other 
                                federally funded programs; and
                                  (II) families living with 
                                Alzheimer's disease; and
                          (ii) improve health outcomes and 
                        reduce disparities;
                  (B) implementation steps; and
                  (C) priority actions to improve the 
                prevention, diagnosis, treatment, care, 
                institutional-, home-, and community-based 
                programs of Alzheimer's disease for individuals 
                with Alzheimer's disease and their caregivers; 
                and
          (4) an annually updated national plan.
  (h) Sunset.--The Project shall expire on December 31, [2025] 
2035.

                                  [all]