[House Report 118-531]
[From the U.S. Government Publishing Office]


118th Congress }                                             { Report
                        HOUSE OF REPRESENTATIVES
 2d Session    }                                             { 118-531

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



 
             ALZHEIMER'S ACCOUNTABILITY AND INVESTMENT ACT 

                                _______
                                

  May 31, 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. 620]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 620) to require an annual budget estimate for 
the initiatives of the National Institutes of Health pursuant 
to reports and recommendations made under the National 
Alzheimer's Project Act, having considered the same, reports 
favorably thereon without amendment and recommends that the 
bill do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     1
Background and Need for Legislation..............................     2
Committee Action.................................................     2
Committee Votes..................................................     2
Oversight Findings and Recommendations...........................     4
New Budget Authority, Entitlement Authority, and Tax Expenditures     4
Congressional Budget Office Estimate.............................     4
Federal Mandates Statement.......................................     4
Statement of General Performance Goals and Objectives............     4
Duplication of Federal Programs..................................     4
Related Committee and Subcommittee Hearings......................     4
Committee Cost Estimate..........................................     5
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     5
Advisory Committee Statement.....................................     5
Applicability to Legislative Branch..............................     5
Section-by-Section Analysis of the Legislation...................     5
Changes in Existing Law Made by the Bill, as Reported............     5

                          Purpose and Summary

    H.R. 620 requires the National Institutes of Health (NIH) 
to continue to submit an annual professional judgement budget 
estimate to Congress to achieve the initiatives and goals 
included in the National Plan to Address Alzheimer's Disease.

                  Background and Need for Legislation

    In 2023, providing care for people with Alzheimer's disease 
cost Medicare and Medicaid an estimated $222 billion.\1\ 
Currently, Medicare is spending 1 in every 7 dollars on 
services for beneficiaries with Alzheimer's disease. This 
spending is projected to increase to $644 billion in 2050.\2\ 
Continued investment in researching prevention and treatment of 
Alzheimer's disease and dementia will improve the quality of 
life for millions of Americans and could lead to significant 
long-term financial savings. This bill helps ensure that 
Congress can effectively assess funding of Alzheimer's research 
in relation to the goals of the National Alzheimer's Project 
Act.
---------------------------------------------------------------------------
    \1\Alzheimer's Association, ``Fact Sheet: NAPA Reauthorization Act 
& Alzheimer's Accountability and Investment Act'', 2023. https://
alzimpact.org/sites/default/files/2023-03/NAPA%20Rea 
uthorization%20Act%20and%20the%20Alzheimer%27s%20Accountability%20and%20
Investment %20Act%20%282%29.pdf.
    \2\Id.
---------------------------------------------------------------------------

                            Committee Action

    On February 14, 2024, the Subcommittee on Health held a 
hearing on H.R. 620. 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.
    On March 12, 2024, the Subcommittee on Health met in open 
markup session and forwarded H.R. 620, without amendment, 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. 620, 
without amendment, 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. 620 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 promote 
effective coordination and planning for the continued 
investment in Alzheimer's disease and dementia research.

                    Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 620 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. 620:
           On February 14, 2024, the Subcommittee on 
        Health held a hearing on H.R. 620. 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. 620 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 
``Alzheimer's Accountability and Investment Act''.

Section 2. Extension of project

    Section 2 requires the Director of the National Institutes 
of Health to prepare and submit an annual professional 
judgement budget estimate for the reports and recommendations 
made under the National Alzheimer's Project Act.

         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 
        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) early diagnosis of Alzheimer's disease; 
                and
                  (B) coordination of the care and treatment of 
                citizens with Alzheimer's;
          (5) ensure the inclusion of ethnic and racial 
        populations 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) 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 in 
        preparing for the escalating burden of Alzheimer's, 
        including both implementation steps and recommendations 
        for priority actions based on the assessment.
  (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.
                  (B) Non-federal members.--In addition to the 
                members outlined in subparagraph (A), the 
                Advisory Council shall include 12 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 with Alzheimer's-
                        related expertise in basic, 
                        translational, clinical, or drug 
                        development science; and
                          (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.
          (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 of all federally 
                funded efforts in Alzheimer's research, 
                clinical care, and institutional-, home-, and 
                community-based programs and their outcomes;
                  (B) initial recommendations for priority 
                actions to expand, eliminate, coordinate, or 
                condense programs based on the program's 
                performance, mission, and purpose;
                  (C) initial 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
                  (D) annually thereafter, an evaluation 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.
  (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 of 
        all federally funded efforts in Alzheimer's research, 
        clinical care, and institutional-, home-, and 
        community-based programs and their outcomes;
          (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;
                  (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) Professional Judgment Budget.--For fiscal year 2024 and 
each subsequent fiscal year, the Director of the National 
Institutes of Health shall prepare and submit, directly to the 
President for review and transmittal to Congress, after 
reasonable opportunity for comment, but without change, by the 
Secretary of Health and Human Services and the Advisory 
Council, an annual budget estimate for the initiatives of the 
National Institutes of Health pursuant to the reports and 
recommendations made under this Act, including an estimate of 
the number and type of personnel needs for the National 
Institutes of Health.
  [(h)] (i) Sunset.--The Project shall expire on December 31, 
2025.

                                  [all]