Tick-Borne Disease Research Accountability and Transparency Act of 2014

Bill: 113-hr-4701
Sponsor: full_name: Rep. Gibson, Christopher P. [R-NY-19]
Introduced: 2014-05-21
Policy area: Health
Subjects: Advisory bodies

Government information and archives

Health information and medical records

Infectious and parasitic diseases

Medical research

Research administration and funding
Latest action: action_date: 2014-09-10
text: Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

Summaries:
action_date: 2014-05-21
action_desc: Introduced in House
text: <p>Vector-Borne Disease Research Accountability and Transparency Act of 2014 - Amends the Public Health Service Act to require the Directors of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to: (1) develop scientific frameworks for research on at least two vector-borne diseases that have a high domestic incidence, and (2) convene a working group for each identified disease.</p> <p> Defines &quot;vector-borne disease&quot; as an infection transmitted to humans or other animals by ticks, mosquitoes, or fleas. Treats tick-borne diseases, including Lyme disease, as a single such disease. </p>

action_date: 2014-09-08
action_desc: Reported to House with amendment(s)
text: <p>Tick-Borne Disease Research Accountability and Transparency Act of 2014 - Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) to conduct or support epidemiological, basic, translational, and clinical research regarding Lyme disease and other tick-borne diseases.</p> <p>Directs the Secretary to establish the Interagency Lyme and Tick-Borne Disease Working Group to review all HHS efforts concerning tick-borne diseases to ensure interagency coordination and examine research priorities. Requires the Working Group to: (1) provide a summary of tick-borne disease research, advances, and scientific viewpoints every two years; (2) make recommendations to HHS regarding tick-borne disease activities; and (3) hold annual public meetings.</p> Requires HHS to submit a strategic plan for tick-borne disease research within three years of enactment and every five years thereafter that includes: (1) budgetary requirements; (2) benchmarks for improving tick-borne disease diagnosis, treatment, outcomes, and prevention; and (3) a plan to disseminate Working Group summaries and other relevant information on tick-borne disease to health professionals and the public.

action_date: 2014-09-09
action_desc: Passed House amended
text: <p>Tick-Borne Disease Research Accountability and Transparency Act of 2014 - Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) to conduct or support epidemiological, basic, translational, and clinical research regarding Lyme disease and other tick-borne diseases.</p> <p>Directs the Secretary to establish the Interagency Lyme and Tick-Borne Disease Working Group to review all HHS efforts concerning tick-borne diseases to ensure interagency coordination and examine research priorities. Requires the Working Group to: (1) provide a summary of tick-borne disease research, advances, and scientific viewpoints every two years; (2) make recommendations to HHS regarding tick-borne disease activities; and (3) hold annual public meetings.</p>Requires HHS to submit a strategic plan for tick-borne disease research within three years of enactment and every five years thereafter that includes: (1) budgetary requirements; (2) benchmarks for improving tick-borne disease diagnosis, treatment, outcomes, and prevention; and (3) a plan to disseminate Working Group summaries and other relevant information on tick-borne disease to health professionals and the public.

tv_txt: I 113th CONGRESS 2d Session H. R. 4701 IN THE HOUSE OF REPRESENTATIVES May 21, 2014 Mr. Gibson (for himself, Mr. Courtney , Mr. Peterson , Mr. Smith of New Jersey , Mr. Wolf , and Mr. Barletta ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To provide for scientific frameworks with respect to vector-borne diseases.

1. Short title This Act may be cited as the Vector-Borne Disease Research Accountability and Transparency Act of 2014 . 2. Scientific framework for vector-borne diseases Subpart 6 of part C of title IV of the Public Health Service Act ( 42 U.S.C. 285f et seq. ) is amended by adding at the end the following: 447D. Scientific framework for vector-borne diseases (a) Development of Scientific Framework for Vector-Borne Diseases (1) In General For each vector-borne disease identified under subsection (b), the Directors shall develop a scientific framework for the conduct or support of research on such vector-borne disease. (2) Contents The scientific framework with respect to a vector-borne disease shall include the following: (A) Current Status (i) Comprehensive review of the literature A summary of findings from the current literature in the areas of— (I) the prevention, diagnosis, and treatment of acute and chronic vector-borne disease; (II) the fundamental environmental and biologic process that regulate acute and chronic vector-borne disease; and (III) the epidemiology of acute and chronic vector-borne disease. (ii) Number of incidences internationally An assessment of the incidence of acute and chronic vector-borne disease reported internationally. (iii) Scientific advances The identification of relevant and diverse emerging scientific areas, and promising scientific advances, in basic, translational, and clinical science relating to the areas described in subclauses (I) and (II) of clause (i). (iv) Researchers A description of the availability of individuals who— (I) conduct scientific research in the areas described in clause (i); and (II) represent a diversity of scientific perspectives relevant to such areas. (v) Coordinated research initiatives The identification of the types of initiatives and partnerships for the coordination of intramural and extramural research of the National Institutes of Health and the Centers for Disease Control and Prevention in the areas described in clause (i) with research of the relevant national research institutes, Federal agencies, and non-Federal public and private entities in such areas. (vi) Research resources The identification of public and private resources, such as patient registries, that are available to facilitate research relating to each of the areas described in clause (i). (B) Identification of Research Questions The identification of research questions relating to basic, translational, and clinical science in the areas described in subclauses (I) and (II) of subparagraph (A)(i) that have not been adequately addressed with respect to acute or chronic vector-borne disease. (C) Recommendations Recommendations for appropriate actions that should be taken to advance research in the areas described in subparagraph (A)(i) and to address the research questions identified in subparagraph (B), as well as for appropriate benchmarks to measure progress on achieving such action, including the following: (i) Researchers Ensuring adequate availability of individuals described in subparagraph (A)(iv). (ii) Coordinated research initiatives Promoting and developing initiatives and partnerships described in subparagraph (A)(v). (iii) Research resources Developing additional public and private resources described in subparagraph (A)(vi) and strengthening existing resources. (3) Timing (A) Initial development and subsequent update For each vector-borne disease identified under subsection (b)(1), the Directors shall— (i) develop a scientific framework under this subsection not later than 18 months after the date of the enactment of this section; and (ii) review and update the scientific framework not later than 5 years after its initial development. (B) Other updates The Directors may review and update each scientific framework developed under this subsection as necessary. (4) Public Notice With respect to each scientific framework developed under this subsection, not later than 30 days after the date of completion of the framework, the Directors shall— (A) submit such framework to the Committee on Energy and Commerce and the Committee on Appropriations of the House of Representatives, and the Committee on Health, Education, Labor, and Pensions and the Committee on Appropriations of the Senate; and (B) make such framework publicly available on the Internet Web site of the Department of Health and Human Services. (b) Identification of vector-Borne diseases (1) In general Not later than 6 months after the date of the enactment of this section, the Directors shall identify 2 or more bacterial or parasitic vector-borne diseases that each have a high incidence domestically. (2) Treating tick-borne diseases as a single vector-borne disease For purposes of identifying vector-borne diseases under this subsection and developing scientific frameworks for such diseases under subsection (a), tick-borne diseases, including Lyme disease and other tick-borne diseases that are known to be transmitted by ticks to humans in the United States, shall be treated as a single vector-borne disease. (3) Additional vector-borne diseases Subject to paragraph (2), the Directors may, at any time, identify other vector-borne diseases for purposes of this section. In identifying a vector-borne disease pursuant to the previous sentence, the Directors may consider additional metrics of progress against such type of vector-borne disease. (c) Working groups (1) In general For each vector-borne disease identified under subsection (b), the Directors shall convene a working group in accordance with the Federal Advisory Committee Act. The Directors (or their designees) shall participate in the meetings of each such working group. (2) Members Each working group convened under this subsection shall be comprised of the following members: (A) One or more representatives of each of the following: (i) The National Institutes of Health. (ii) The Centers for Disease Control and Prevention. (iii) Other agencies or offices of the Department of Health and Human Services, as determined appropriate by the Directors. (iv) Other Federal agencies, as determined appropriate by the Directors. (B) One or more representatives of each of the following categories: (i) Physicians with experience in diagnosing and treating stages or manifestations of the relevant vector-borne disease. (ii) Non-Federal scientists or researchers with expertise, and representing a diversity of perspectives, regarding the science pertaining to vector-borne diseases. (iii) Patients and their family members. (iv) Nonprofit organizations that advocate for patients by promoting education, services, or research. (v) Other individuals whose expertise is determined by the Directors to be beneficial to the functioning of the working group. (C) One individual appointed by the Speaker of the House of Representatives. (D) One individual appointed by the Majority Leader of the Senate. (3) FACA sunset inapplicable Section 14(a) of the Federal Advisory Committee Act (5 U.S.C. App.; relating to termination of advisory committees) shall not apply to a working group convened under paragraph (1). (4) Other working groups If the Directors, in addition to convening the working groups required by this subsection, choose to continue any working group on any vector-borne disease in existence on the date of enactment of the Vector-Borne Disease Research Accountability and Transparency Act of 2014 , any such working group is deemed to be an advisory committee subject to the Federal Advisory Committee Act. (d) Public hearings (1) In General The Directors shall, within 60 days after identifying a vector-borne disease under section (b), and annually thereafter, convene public forums— (A) to seek public input on the development of the scientific framework for such vector-borne disease under this section and progress in addressing related chronic conditions; and (B) to identify, and seek public input on, potential emerging strains in species of pathogenic organisms. (2) Participants The participants at the forums convened under this subsection shall be researchers, physicians, patients, and other members of the public. (e) Reporting (1) Biennial reports The Directors shall ensure that each biennial report under section 403 includes information on actions undertaken to carry out each scientific framework developed under subsection (a) with respect to a vector-borne disease, including the following: (A) Information on research grants awarded by the National Institutes of Health and the Centers for Disease Control and Prevention for research relating to such vector-borne disease. (B) An assessment of the progress made in improving outcomes. (2) Additional one-time reports (A) Frameworks For each vector-borne disease identified under subsection (b)(1), the Directors shall, not later than 6 years after the initial development of a scientific framework for such disease under subsection (a), submit a report to the Congress on the effectiveness of the framework (including the update required by subsection (a)(3)(A)(ii)) in improving the prevention, detection, diagnosis, and treatment of such disease. (B) Total number of working groups Not later than 1 year after the date of enactment of this section, the Directors shall submit a report to the Congress identifying the total number of working groups convened under this section. (f) Recommendations for exception funding The Directors shall consider each relevant scientific framework developed under subsection (a) when making recommendations for exception funding for grant applications. (g) Definition In this section: (1) The term Directors means the Director of NIH and the Director of the Centers for Disease Control and Prevention acting jointly. (2) The term vector-borne disease means an infection transmitted to humans or other animals by ticks, mosquitoes, or fleas, such as Lyme disease. .

tv_txt: I 113th CONGRESS 2d Session H. R. 4701 IN THE HOUSE OF REPRESENTATIVES AN ACT To provide for research with respect to Lyme disease and other tick-borne diseases, and for other purposes.

1. Short title This Act may be cited as the Tick-Borne Disease Research Accountability and Transparency Act of 2014 . 2. Lyme disease and other tick-borne diseases Title III of the Public Health Service Act ( 42 U.S.C. 241 et seq. ) is amended by adding at the end the following new part: W Lyme disease and other tick-borne diseases 399OO. Research (a) In general The Secretary shall conduct or support epidemiological, basic, translational, and clinical research regarding Lyme disease and other tick-borne diseases. (b) Biennial reports The Secretary shall ensure that each biennial report under section 403 includes information on actions undertaken by the National Institutes of Health to carry out subsection (a) with respect to Lyme disease and other tick-borne diseases, including an assessment of the progress made in improving the outcomes of Lyme disease and such other tick-borne diseases. 399OO–1. Working Group (a) Establishment The Secretary shall establish a permanent working group, to be known as the Interagency Lyme and Tick-Borne Disease Working Group (in this section and section 399OO–2 referred to as the Working Group ), to review all efforts within the Department of Health and Human Services concerning Lyme disease and other tick-borne diseases to ensure interagency coordination, minimize overlap, and examine research priorities. (b) Responsibilities The Working Group shall— (1) not later than 24 months after the date of enactment of this part, and every 24 months thereafter, develop or update a summary of— (A) ongoing Lyme disease and other tick-borne disease research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, intervention, and access to services and supports for individuals with Lyme disease or other tick-borne diseases; (B) advances made pursuant to such research; (C) the engagement of the Department of Health and Human Services with persons that participate at the public meetings required by paragraph (5); and (D) the comments received by the Working Group at such public meetings and the Secretary’s response to such comments; (2) ensure that a broad spectrum of scientific viewpoints is represented in each such summary; (3) monitor Federal activities with respect to Lyme disease and other tick-borne diseases; (4) make recommendations to the Secretary regarding any appropriate changes to such activities; and (5) ensure public input by holding annual public meetings that address scientific advances, research questions, surveillance activities, and emerging strains in species of pathogenic organisms. (c) Membership (1) In general The Working Group shall be composed of a total of 14 members as follows: (A) Federal members Seven Federal members, consisting of one or more representatives of each of— (i) the Office of the Assistant Secretary for Health; (ii) the Food and Drug Administration; (iii) the Centers for Disease Control and Prevention; (iv) the National Institutes of Health; and (v) such other agencies and offices of the Department of Health and Human Services as the Secretary determines appropriate. (B) Non-Federal public members Seven non-Federal public members, consisting of representatives of the following categories: (i) Physicians and other medical providers with experience in diagnosing and treating Lyme disease and other tick-borne diseases. (ii) Scientists or researchers with expertise. (iii) Patients and their family members. (iv) Nonprofit organizations that advocate for patients with respect to Lyme disease and other tick-borne diseases. (v) Other individuals whose expertise is determined by the Secretary to be beneficial to the functioning of the Working Group. (2) Appointment The members of the Working Group shall be appointed by the Secretary, except that of the non-Federal public members under paragraph (1)(B)— (A) one shall be appointed by the Speaker of the House of Representatives; and (B) one shall be appointed by the Majority Leader of the Senate. (3) Diversity of scientific perspectives In making appointments under paragraph (2), the Secretary, the Speaker of the House of Representatives, and the Majority Leader of the Senate shall ensure that the non-Federal public members of the Working Group represent a diversity of scientific perspectives. (4) Terms The non-Federal public members of the Working Group shall each be appointed to serve a 4-year term and may be reappointed at the end of such term. (d) Meetings The Working Group shall meet as often as necessary, as determined by the Secretary, but not less than twice each year. (e) Applicability of FACA The Working Group shall be treated as an advisory committee subject to the Federal Advisory Committee Act. (f) Reporting Not later than 24 months after the date of enactment of this part, and every 24 months thereafter, the Working Group— (1) shall submit a report on its activities, including an up-to-date summary under subsection (b)(1) and any recommendations under subsection (b)(4), to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor and Pensions of the Senate; (2) shall make each such report publicly available on the website of the Department of Health and Human Services; and (3) shall allow any member of the Working Group to include in any such report minority views. 399OO–2. Strategic plan Not later than 3 years after the date of enactment of this section, and every 5 years thereafter, the Secretary shall submit to the Congress a strategic plan, informed by the most recent summary under section 399OO–1(b)(1), for the conduct and support of Lyme disease and tick-borne disease research, including— (1) proposed budgetary requirements; (2) a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; (3) a plan for improving diagnosis, treatment, and prevention; (4) appropriate benchmarks to measure progress on achieving the improvements described in paragraphs (2) and (3); and (5) a plan to disseminate each summary under section 399OO–1(b)(1) and other relevant information developed by the Working Group to the public, including health care providers, public health departments, and other relevant medical groups. . 3. No additional authorization of appropriations No additional funds are authorized to be appropriated to carry out this Act and the amendment made by this Act, and this Act and such amendment shall be carried out using amounts otherwise available for such purpose.

Passed the House of Representatives September 9, 2014. Karen L. Haas, Clerk.

tv_txt: IIB 113th CONGRESS 2d Session H. R. 4701 IN THE SENATE OF THE UNITED STATES September 10, 2014 Received; read twice and referred to the Committee on Health, Education, Labor, and Pensions AN ACT To provide for research with respect to Lyme disease and other tick-borne diseases, and for other purposes.

1. Short title This Act may be cited as the Tick-Borne Disease Research Accountability and Transparency Act of 2014 . 2. Lyme disease and other tick-borne diseases Title III of the Public Health Service Act ( 42 U.S.C. 241 et seq. ) is amended by adding at the end the following new part: W Lyme disease and other tick-borne diseases 399OO. Research (a) In general The Secretary shall conduct or support epidemiological, basic, translational, and clinical research regarding Lyme disease and other tick-borne diseases. (b) Biennial reports The Secretary shall ensure that each biennial report under section 403 includes information on actions undertaken by the National Institutes of Health to carry out subsection (a) with respect to Lyme disease and other tick-borne diseases, including an assessment of the progress made in improving the outcomes of Lyme disease and such other tick-borne diseases. 399OO–1. Working Group (a) Establishment The Secretary shall establish a permanent working group, to be known as the Interagency Lyme and Tick-Borne Disease Working Group (in this section and section 399OO–2 referred to as the Working Group ), to review all efforts within the Department of Health and Human Services concerning Lyme disease and other tick-borne diseases to ensure interagency coordination, minimize overlap, and examine research priorities. (b) Responsibilities The Working Group shall— (1) not later than 24 months after the date of enactment of this part, and every 24 months thereafter, develop or update a summary of— (A) ongoing Lyme disease and other tick-borne disease research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, intervention, and access to services and supports for individuals with Lyme disease or other tick-borne diseases; (B) advances made pursuant to such research; (C) the engagement of the Department of Health and Human Services with persons that participate at the public meetings required by paragraph (5); and (D) the comments received by the Working Group at such public meetings and the Secretary’s response to such comments; (2) ensure that a broad spectrum of scientific viewpoints is represented in each such summary; (3) monitor Federal activities with respect to Lyme disease and other tick-borne diseases; (4) make recommendations to the Secretary regarding any appropriate changes to such activities; and (5) ensure public input by holding annual public meetings that address scientific advances, research questions, surveillance activities, and emerging strains in species of pathogenic organisms. (c) Membership (1) In general The Working Group shall be composed of a total of 14 members as follows: (A) Federal members Seven Federal members, consisting of one or more representatives of each of— (i) the Office of the Assistant Secretary for Health; (ii) the Food and Drug Administration; (iii) the Centers for Disease Control and Prevention; (iv) the National Institutes of Health; and (v) such other agencies and offices of the Department of Health and Human Services as the Secretary determines appropriate. (B) Non-Federal public members Seven non-Federal public members, consisting of representatives of the following categories: (i) Physicians and other medical providers with experience in diagnosing and treating Lyme disease and other tick-borne diseases. (ii) Scientists or researchers with expertise. (iii) Patients and their family members. (iv) Nonprofit organizations that advocate for patients with respect to Lyme disease and other tick-borne diseases. (v) Other individuals whose expertise is determined by the Secretary to be beneficial to the functioning of the Working Group. (2) Appointment The members of the Working Group shall be appointed by the Secretary, except that of the non-Federal public members under paragraph (1)(B)— (A) one shall be appointed by the Speaker of the House of Representatives; and (B) one shall be appointed by the Majority Leader of the Senate. (3) Diversity of scientific perspectives In making appointments under paragraph (2), the Secretary, the Speaker of the House of Representatives, and the Majority Leader of the Senate shall ensure that the non-Federal public members of the Working Group represent a diversity of scientific perspectives. (4) Terms The non-Federal public members of the Working Group shall each be appointed to serve a 4-year term and may be reappointed at the end of such term. (d) Meetings The Working Group shall meet as often as necessary, as determined by the Secretary, but not less than twice each year. (e) Applicability of FACA The Working Group shall be treated as an advisory committee subject to the Federal Advisory Committee Act. (f) Reporting Not later than 24 months after the date of enactment of this part, and every 24 months thereafter, the Working Group— (1) shall submit a report on its activities, including an up-to-date summary under subsection (b)(1) and any recommendations under subsection (b)(4), to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor and Pensions of the Senate; (2) shall make each such report publicly available on the website of the Department of Health and Human Services; and (3) shall allow any member of the Working Group to include in any such report minority views. 399OO–2. Strategic plan Not later than 3 years after the date of enactment of this section, and every 5 years thereafter, the Secretary shall submit to the Congress a strategic plan, informed by the most recent summary under section 399OO–1(b)(1), for the conduct and support of Lyme disease and tick-borne disease research, including— (1) proposed budgetary requirements; (2) a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; (3) a plan for improving diagnosis, treatment, and prevention; (4) appropriate benchmarks to measure progress on achieving the improvements described in paragraphs (2) and (3); and (5) a plan to disseminate each summary under section 399OO–1(b)(1) and other relevant information developed by the Working Group to the public, including health care providers, public health departments, and other relevant medical groups. . 3. No additional authorization of appropriations No additional funds are authorized to be appropriated to carry out this Act and the amendment made by this Act, and this Act and such amendment shall be carried out using amounts otherwise available for such purpose.

Passed the House of Representatives September 9, 2014. Karen L. Haas, Clerk

tv_txt: IB Union Calendar No. 424 113th CONGRESS 2d Session H. R. 4701 [Report No. 113–573] IN THE HOUSE OF REPRESENTATIVES May 21, 2014 Mr. Gibson (for himself, Mr. Courtney , Mr. Peterson , Mr. Smith of New Jersey , Mr. Wolf , and Mr. Barletta ) introduced the following bill; which was referred to the Committee on Energy and Commerce September 8, 2014 Additional sponsors: Mr. Welch , Mr. Sean Patrick Maloney of New York , Mr. Posey , Mr. Wittman , Ms. Schakowsky , Ms. Esty , Mr. Lance , Mr. Shimkus , Mr. Tonko , Mr. Barrow of Georgia , Mr. Keating , Mr. Connolly , Ms. Shea-Porter , and Mr. Maffei September 8, 2014 Reported with amendments, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed Strike out all after the enacting clause and insert the part printed in italic For text of introduced bill, see copy of bill as introduced on May 21, 2014 A BILL To provide for scientific frameworks with respect to vector-borne diseases.

1. Short title This Act may be cited as the Tick-Borne Disease Research Accountability and Transparency Act of 2014 . 2. Lyme disease and other tick-borne diseases Title III of the Public Health Service Act ( 42 U.S.C. 241 et seq. ) is amended by adding at the end the following new part: W Lyme disease and other tick-borne diseases 399OO. Research (a) In general The Secretary shall conduct or support epidemiological, basic, translational, and clinical research regarding Lyme disease and other tick-borne diseases. (b) Biennial reports The Secretary shall ensure that each biennial report under section 403 includes information on actions undertaken by the National Institutes of Health to carry out subsection (a) with respect to Lyme disease and other tick-borne diseases, including an assessment of the progress made in improving the outcomes of Lyme disease and such other tick-borne diseases. 399OO–1. Working Group (a) Establishment The Secretary shall establish a permanent working group, to be known as the Interagency Lyme and Tick-Borne Disease Working Group (in this section and section 399OO–2 referred to as the Working Group ), to review all efforts within the Department of Health and Human Services concerning Lyme disease and other tick-borne diseases to ensure interagency coordination, minimize overlap, and examine research priorities. (b) Responsibilities The Working Group shall— (1) not later than 24 months after the date of enactment of this part, and every 24 months thereafter, develop or update a summary of— (A) ongoing Lyme disease and other tick-borne disease research related to causes, prevention, treatment, surveillance, diagnosis, duration of illness, intervention, and access to services and supports for individuals with Lyme disease or other tick-borne diseases; (B) advances made pursuant to such research; (C) the engagement of the Department of Health and Human Services with persons that participate at the public meetings required by paragraph (5); and (D) the comments received by the Working Group at such public meetings and the Secretary’s response to such comments; (2) ensure that a broad spectrum of scientific viewpoints is represented in each such summary; (3) monitor Federal activities with respect to Lyme disease and other tick-borne diseases; (4) make recommendations to the Secretary regarding any appropriate changes to such activities; and (5) ensure public input by holding annual public meetings that address scientific advances, research questions, surveillance activities, and emerging strains in species of pathogenic organisms. (c) Membership (1) In general The Working Group shall be composed of a total of 14 members as follows: (A) Federal members Seven Federal members, consisting of one or more representatives of each of— (i) the Office of the Assistant Secretary for Health; (ii) the Food and Drug Administration; (iii) the Centers for Disease Control and Prevention; (iv) the National Institutes of Health; and (v) such other agencies and offices of the Department of Health and Human Services as the Secretary determines appropriate. (B) Non-Federal public members Seven non-Federal public members, consisting of representatives of the following categories: (i) Physicians and other medical providers with experience in diagnosing and treating Lyme disease and other tick-borne diseases. (ii) Scientists or researchers with expertise. (iii) Patients and their family members. (iv) Nonprofit organizations that advocate for patients with respect to Lyme disease and other tick-borne diseases. (v) Other individuals whose expertise is determined by the Secretary to be beneficial to the functioning of the Working Group. (2) Appointment The members of the Working Group shall be appointed by the Secretary, except that of the non-Federal public members under paragraph (1)(B)— (A) one shall be appointed by the Speaker of the House of Representatives; and (B) one shall be appointed by the Majority Leader of the Senate. (3) Diversity of scientific perspectives In making appointments under paragraph (2), the Secretary, the Speaker of the House of Representatives, and the Majority Leader of the Senate shall ensure that the non-Federal public members of the Working Group represent a diversity of scientific perspectives. (4) Terms The non-Federal public members of the Working Group shall each be appointed to serve a 4-year term and may be reappointed at the end of such term. (d) Meetings The Working Group shall meet as often as necessary, as determined by the Secretary, but not less than twice each year. (e) Reporting Not later than 24 months after the date of enactment of this part, and every 24 months thereafter, the Working Group— (1) shall submit a report on its activities, including an up-to-date summary under subsection (b)(1) and any recommendations under subsection (b)(4), to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor and Pensions of the Senate; (2) shall make each such report publicly available on the website of the Department of Health and Human Services; and (3) shall allow any member of the Working Group to include in any such report minority views. 399OO–2. Strategic plan Not later than 3 years after the date of enactment of this section, and every 5 years thereafter, the Secretary shall submit to the Congress a strategic plan, informed by the most recent summary under section 399OO–1(b)(1), for the conduct and support of Lyme disease and tick-borne disease research, including— (1) proposed budgetary requirements; (2) a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; (3) a plan for improving diagnosis, treatment, and prevention; (4) appropriate benchmarks to measure progress on achieving the improvements described in paragraphs (2) and (3); and (5) a plan to disseminate each summary under section 399OO–1(b)(1) and other relevant information developed by the Working Group to the public, including health care providers, public health departments, and other relevant medical groups. .

Amend the title so as to read: A bill to provide for research with respect to Lyme disease and other tick-borne diseases, and for other purposes. .

September 8, 2014 Reported with amendments, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed