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 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Tick-Borne Disease 

3 Research Accountability and Transparency Act of 2014’’. 

4 SEC. 2. LYME DISEASE AND OTHER TICK-BORNE DISEASES. 

5 Title III of the Public Health Service Act (42 U.S.C. 

6 241 et seq.) is amended by adding at the end the following 

7 new part: 

8 ‘‘PART W—LYME DISEASE AND OTHER TICK9 BORNE DISEASES 

10 ‘‘SEC. 399OO. RESEARCH. 

11 ‘‘(a) IN GENERAL.—The Secretary shall conduct or 

12 support epidemiological, basic, translational, and clinical 

13 research regarding Lyme disease and other tick-borne dis14 eases. 

15 ‘‘(b) BIENNIAL REPORTS.—The Secretary shall en16 sure that each biennial report under section 403 includes 

17 information on actions undertaken by the National Insti18 tutes of Health to carry out subsection (a) with respect 

19 to Lyme disease and other tick-borne diseases, including 

20 an assessment of the progress made in improving the out21 comes of Lyme disease and such other tick-borne diseases. 

22 ‘‘SEC. 399OO–1. WORKING GROUP. 

23 ‘‘(a) ESTABLISHMENT.—The Secretary shall estab24 lish a permanent working group, to be known as the Inter25 agency Lyme and Tick-Borne Disease Working Group (in 

26 this section and section 399OO–2 referred to as the 


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1 ‘Working Group’), to review all efforts within the Depart2 ment of Health and Human Services concerning Lyme dis3 ease and other tick-borne diseases to ensure interagency 

4 coordination, minimize overlap, and examine research pri5 orities. 

6 ‘‘(b) RESPONSIBILITIES.—The Working Group 

7 shall— 

8 ‘‘(1) not later than 24 months after the date of 

9 enactment of this part, and every 24 months there10 after, develop or update a summary of— 

11 ‘‘(A) ongoing Lyme disease and other tick12 borne disease research related to causes, pre13 vention, treatment, surveillance, diagnosis, 

14 diagnostics, duration of illness, intervention, 

15 and access to services and supports for individ16 uals with Lyme disease or other tick-borne dis17 eases; 

18 ‘‘(B) advances made pursuant to such re19 search; 

20 ‘‘(C) the engagement of the Department of 

21 Health and Human Services with persons that 

22 participate at the public meetings required by 

23 paragraph (5); and 


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1 ‘‘(D) the comments received by the Work2 ing Group at such public meetings and the Sec3 retary’s response to such comments; 

4 ‘‘(2) ensure that a broad spectrum of scientific 

5 viewpoints is represented in each such summary; 

6 ‘‘(3) monitor Federal activities with respect to 

7 Lyme disease and other tick-borne diseases; 

8 ‘‘(4) make recommendations to the Secretary 

9 regarding any appropriate changes to such activities; 

10 and 

11 ‘‘(5) ensure public input by holding annual pub12 lic meetings that address scientific advances, re13 search questions, surveillance activities, and emerg14 ing strains in species of pathogenic organisms. 

15 ‘‘(c) MEMBERSHIP.— 

16 ‘‘(1) IN GENERAL.—The Working Group shall 

17 be composed of a total of 14 members as follows: 

18 ‘‘(A) FEDERAL MEMBERS.—Seven Federal 

19 members, consisting of one or more representa20 tives of each of— 

21 ‘‘(i) the Office of the Assistant Sec22 retary for Health; 

23 ‘‘(ii) the Food and Drug Administra24 tion; 


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1 ‘‘(iii) the Centers for Disease Control 

2 and Prevention; 

3 ‘‘(iv) the National Institutes of 

4 Health; and 

5 ‘‘(v) such other agencies and offices of 

6 the Department of Health and Human 

7 Services as the Secretary determines ap8 propriate. 

9 ‘‘(B) NON-FEDERAL PUBLIC MEMBERS.— 

10 Seven non-Federal public members, consisting 

11 of representatives of the following categories: 

12 ‘‘(i) Physicians and other medical pro13 viders with experience in diagnosing and 

14 treating Lyme disease and other tick-borne 

15 diseases. 

16 ‘‘(ii) Scientists or researchers with ex17 pertise. 

18 ‘‘(iii) Patients and their family mem19 bers. 

20 ‘‘(iv) Nonprofit organizations that ad21 vocate for patients with respect to Lyme 

22 disease and other tick-borne diseases. 

23 ‘‘(v) Other individuals whose expertise 

24 is determined by the Secretary to be beneVerDate Mar 15 2010 22:27 Sep 10, 2014 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H4701.RFS H4701

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1 ficial to the functioning of the Working 

2 Group. 

3 ‘‘(2) APPOINTMENT.—The members of the 

4 Working Group shall be appointed by the Secretary, 

5 except that of the non-Federal public members 

6 under paragraph (1)(B)— 

7 ‘‘(A) one shall be appointed by the Speaker 

8 of the House of Representatives; and 

9 ‘‘(B) one shall be appointed by the Major10 ity Leader of the Senate. 

11 ‘‘(3) DIVERSITY OF SCIENTIFIC PERSPEC12 TIVES.—In making appointments under paragraph 

13 (2), the Secretary, the Speaker of the House of Rep14 resentatives, and the Majority Leader of the Senate 

15 shall ensure that the non-Federal public members of 

16 the Working Group represent a diversity of scientific 

17 perspectives. 

18 ‘‘(4) TERMS.—The non-Federal public members 

19 of the Working Group shall each be appointed to 

20 serve a 4-year term and may be reappointed at the 

21 end of such term. 

22 ‘‘(d) MEETINGS.—The Working Group shall meet as 

23 often as necessary, as determined by the Secretary, but 

24 not less than twice each year. 


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1 ‘‘(e) APPLICABILITY OF FACA.—The Working Group 

2 shall be treated as an advisory committee subject to the 

3 Federal Advisory Committee Act. 

4 ‘‘(f) REPORTING.—Not later than 24 months after 

5 the date of enactment of this part, and every 24 months 

6 thereafter, the Working Group— 

7 ‘‘(1) shall submit a report on its activities, in8 cluding an up-to-date summary under subsection 

9 (b)(1) and any recommendations under subsection 

10 (b)(4), to the Secretary, the Committee on Energy 

11 and Commerce of the House of Representatives, and 

12 the Committee on Health, Education, Labor and 

13 Pensions of the Senate; 

14 ‘‘(2) shall make each such report publicly avail15 able on the website of the Department of Health and 

16 Human Services; and 

17 ‘‘(3) shall allow any member of the Working 

18 Group to include in any such report minority views. 

19 ‘‘SEC. 399OO–2. STRATEGIC PLAN. 

20 ‘‘Not later than 3 years after the date of enactment 

21 of this section, and every 5 years thereafter, the Secretary 

22 shall submit to the Congress a strategic plan, informed 

23 by the most recent summary under section 399OO– 

24 1(b)(1), for the conduct and support of Lyme disease and 

25 tick-borne disease research, including— 


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1 ‘‘(1) proposed budgetary requirements; 

2 ‘‘(2) a plan for improving outcomes of Lyme 

3 disease and other tick-borne diseases, including 

4 progress related to chronic or persistent symptoms 

5 and chronic or persistent infection and co-infections; 

6 ‘‘(3) a plan for improving diagnosis, treatment, 

7 and prevention; 

8 ‘‘(4) appropriate benchmarks to measure 

9 progress on achieving the improvements described in 

10 paragraphs (2) and (3); and 

11 ‘‘(5) a plan to disseminate each summary under 

12 section 399OO–1(b)(1) and other relevant informa13 tion developed by the Working Group to the public, 

14 including health care providers, public health depart15 ments, and other relevant medical groups.’’. 

16 SEC. 3. NO ADDITIONAL AUTHORIZATION OF APPROPRIA17 TIONS. 

18 No additional funds are authorized to be appro19 priated to carry out this Act and the amendment made 

20 by this Act, and this Act and such amendment shall be 


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1 carried out using amounts otherwise available for such 

2 purpose. 

Passed the House of Representatives September 9, 

2014. 

Attest: KAREN L. HAAS, 

Clerk. 


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