Tick-Borne Disease Research Accountability and Transparency Act of 2014

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Tick-Borne Disease Research 
Accountability and Transparency Act of 2014''.

SEC. 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:

          ``PART W--LYME DISEASE AND OTHER TICK-BORNE DISEASES

``SEC. 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.

``SEC. 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.

``SEC. 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.''.

SEC. 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.

            Attest:

                                                 KAREN L. HAAS,

                                                                 Clerk.

Summary: 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. 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. 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.