[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4701 Engrossed in House (EH)]
113th CONGRESS
2d Session
H. R. 4701
_______________________________________________________________________
AN ACT
To provide for research with respect to Lyme disease and other tick-
borne diseases, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
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:
Clerk.
113th CONGRESS
2d Session
H. R. 4701
_______________________________________________________________________
AN ACT
To provide for research with respect to Lyme disease and other tick-
borne diseases, and for other purposes.