[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1179 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 1179

    To provide for the expansion of Federal efforts concerning the 
 prevention, education, treatment, and research activities related to 
 Lyme and other tick-borne diseases, including the establishment of a 
                Tick-Borne Diseases Advisory Committee.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 25, 2009

  Mr. Smith of New Jersey (for himself, Mr. Wolf, Mr. Stupak, and Mr. 
   Holden) introduced the following bill; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
    To provide for the expansion of Federal efforts concerning the 
 prevention, education, treatment, and research activities related to 
 Lyme and other tick-borne diseases, including the establishment of a 
                Tick-Borne Diseases Advisory Committee.

    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 ``Lyme and Tick-Borne Diseases 
Prevention, Education, and Research Act of 2009''.

SEC. 2. FINDINGS.

    The Congress makes the following findings:
            (1) Lyme disease is a common but frequently misunderstood 
        illness that, if not caught early and treated properly, can 
        cause serious health problems.
            (2) Lyme disease is caused by the bacterium Borrelia 
        burgdorferi, which belongs to the class of spirochetes, and is 
        transmitted to humans by the bite of infected black-legged 
        ticks. Early signs of infection may include a rash and flu-like 
        symptoms such as fever, muscle aches, headaches, and fatigue.
            (3) Although Lyme disease can be treated with antibiotics 
        if caught early, the disease often goes undetected because it 
        mimics other illnesses or may be misdiagnosed.
            (4) If an individual with Lyme disease does not receive 
        treatment, such individual can develop severe heart, 
        neurological, eye, and joint problems.
            (5) Although Lyme disease accounts for 90 percent of all 
        vector-borne infections in the United States, the ticks that 
        spread Lyme disease also spread other diseases, such as 
        anaplasmosis, babesiosis, and tularemia, and carry Bartonella 
        and other strains of Borrelia. Other tick species, such as the 
        aggressive lone star, spread ehrlichiosis, Rocky Mountain 
        spotted fever, and southern tick-associated rash illness 
        (STARI). Multiple diseases in 1 patient make diagnosis and 
        treatment more difficult.
            (6) The Centers for Disease Control and Prevention reported 
        27,444 new cases of Lyme disease in 2007, a 38 percent increase 
        nationally from 2006. Studies indicate that the actual number 
        of tick-borne disease cases is approximately 10 times the 
        amount reported.
            (7) According to the Centers for Disease Control and 
        Prevention, from 1992 to 2006, the incidence of Lyme disease 
        was highest among children aged 5 to 14 years of age.
            (8) Persistence of symptomatology in many patients without 
        reliable testing makes treatment of patients more difficult.

SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVISORY COMMITTEE.

    (a) Establishment.--Not later than 180 days after the date of the 
enactment of this Act, the Secretary of Health and Human Services 
(referred to in this Act as the ``Secretary'') shall establish within 
the Office of the Secretary an advisory committee to be known as the 
Tick-Borne Diseases Advisory Committee (referred to in this section as 
the ``Committee'').
    (b) Duties.--The Committee shall advise the Secretary and the 
Assistant Secretary for Health regarding the manner in which such 
officials can--
            (1) ensure interagency coordination and communication and 
        minimize overlap regarding efforts to address tick-borne 
        diseases;
            (2) identify opportunities to coordinate efforts with other 
        Federal agencies and private organizations addressing such 
        diseases;
            (3) ensure interagency coordination and communication with 
        constituency groups;
            (4) ensure that a broad spectrum of scientific viewpoints 
        is represented in public health policy decisions and that 
        information disseminated to the public and physicians is 
        balanced; and
            (5) advise relevant Federal agencies on priorities related 
        to the Lyme and tick-borne diseases.
    (c) Membership.--
            (1) Appointed members.--
                    (A) In general.--The Secretary shall appoint the 
                voting members of the Committee from among individuals 
                who are not officers or employees of the Federal 
                Government.
                    (B) Groups.--The voting members of the Committee 
                shall include the following:
                            (i) At least 4 members from the scientific 
                        community representing the broad spectrum of 
                        viewpoints held within the scientific community 
                        related to Lyme and other tick-borne diseases.
                            (ii) At least 2 representatives of tick-
                        borne disease voluntary organizations.
                            (iii) At least 2 health care providers, 
                        including at least 1 full-time practicing 
                        physician, with relevant experience providing 
                        care for individuals with a broad range of 
                        acute and chronic tick-borne diseases.
                            (iv) At least 2 patient representatives who 
                        are individuals who have been diagnosed with a 
                        tick-borne disease or who have had an immediate 
                        family member diagnosed with such a disease.
                            (v) At least 2 representatives of State and 
                        local health departments and national 
                        organizations that represent State and local 
                        health professionals.
                    (C) Diversity.--In appointing members under this 
                paragraph, the Secretary shall ensure that such 
                members, as a group, represent a diversity of 
                scientific perspectives relevant to the duties of the 
                Committee.
            (2) Ex officio members.--The Secretary shall designate, as 
        nonvoting, ex officio members of the Committee, representatives 
        overseeing tick-borne disease activities from each of the 
        following Federal agencies:
                    (A) The Centers for Disease Control and Prevention.
                    (B) The National Institutes of Health.
                    (C) The Agency for Healthcare Research and Quality.
                    (D) The Food and Drug Administration.
                    (E) The Office of the Assistant Secretary for 
                Health.
                    (F) Such additional Federal agencies as the 
                Secretary determines to be appropriate.
            (3) Co-chairpersons.--The Secretary shall designate the 
        Assistant Secretary of Health as the co-chairperson of the 
        Committee. The appointed members of the Committee shall also 
        elect a public co-chairperson. The public co-chairperson shall 
        serve a 2-year term.
            (4) Term of appointment.--The term of service for each 
        member of the Committee appointed under paragraph (1) shall be 
        4 years.
            (5) Vacancy.--A vacancy in the membership of the Committee 
        shall be filled in the same manner as the original appointment. 
        Any member appointed to fill a vacancy for an unexpired term 
        shall be appointed for the remainder of that term. Members may 
        serve after the expiration of their terms until their 
        successors have taken office.
    (d) Meetings.--The Committee shall hold public meetings, except as 
otherwise determined by the Secretary, after providing notice to the 
public of such meetings, and shall meet at least twice a year with 
additional meetings subject to the call of the co-chairpersons. Agenda 
items with respect to such meetings may be added at the request of the 
members of the Committee, including the co-chairpersons. Meetings shall 
be conducted, and records of the proceedings shall be maintained, as 
required by applicable law and by regulations of the Secretary.
    (e) Report.--Not later than 1 year after the date of the enactment 
of this Act, and annually thereafter, the Committee, through the 
Director of the Centers for Disease Control and Prevention and the 
Director of the National Institutes of Health, shall submit a report to 
the Secretary. Each such report shall contain, at a minimum--
            (1) a description of the Committee's functions;
            (2) a list of the Committee's members and their 
        affiliations; and
            (3) a summary of the Committee's activities and 
        recommendations during the previous year, including any 
        significant issues regarding the functioning of the Committee.
    (f) Authorization of Appropriations.--For the purpose of carrying 
out this section, there is authorized to be appropriated $250,000 for 
each of fiscal years 2010 through 2014. Amounts appropriated under the 
preceding sentence shall be used for the expenses and per diem costs 
incurred by the Committee under this section in accordance with the 
Federal Advisory Committee Act, except that no voting member of the 
Committee shall be a permanent salaried employee.

SEC. 4. FEDERAL ACTIVITIES RELATED TO THE DIAGNOSIS, SURVEILLANCE, 
              PREVENTION, AND RESEARCH OF LYME AND OTHER TICK-BORNE 
              DISEASES.

    (a) In General.--The Secretary, acting as appropriate through the 
Director of the Centers for Disease Control and Prevention, the 
Director of the National Institutes of Health, the Commissioner of Food 
and Drugs, and the Director of the Agency for Healthcare Research and 
Quality, as well as additional Federal agencies as the Secretary 
determines to be appropriate, and in consultation with the Tick-Borne 
Diseases Advisory Committee, shall provide for--
            (1) the conduct or support of activities described in 
        paragraphs (1) through (4) of subsection (b); and
            (2) the coordination of all Federal programs and activities 
        related to Lyme disease and other tick-borne diseases.
    (b) Activities.--The activities to be conducted or supported under 
subsection (a) include the following:
            (1) Development of diagnostic tests.--
                    (A) The development of sensitive and more accurate 
                diagnostic tools and tests, including a direct 
                detection test for Lyme disease capable of 
                distinguishing active infection from past infection.
                    (B) Improving the efficient utilization of 
                diagnostic testing currently available to account for 
                the multiple clinical manifestations of both acute and 
                chronic Lyme disease.
                    (C) Providing for the timely evaluation of 
                promising emerging diagnostic methods.
            (2) Surveillance and reporting.--
                    (A) Accurately determining the prevalence of Lyme 
                and other tick-borne disease.
                    (B) Evaluating the feasibility of developing a 
                reporting system for the collection of data on 
                physician-diagnosed cases of Lyme disease that do not 
                meet the surveillance criteria of the Centers for 
                Disease Control and Prevention in order to more 
                accurately gauge disease incidence.
                    (C) Evaluating the feasibility of creating a 
                national uniform reporting system including required 
                reporting by laboratories in each State.
            (3) Prevention.--
                    (A) The provision and promotion of access to a 
                comprehensive, up-to-date clearinghouse of peer-
                reviewed information on Lyme and other tick-borne 
                disease.
                    (B) Increased public education related to Lyme and 
                other tick-borne diseases through the expansion of the 
                community-based education programs of the Centers for 
                Disease Control and Prevention to include expansion of 
                information access points to the public.
                    (C) The creation of a physician education program 
                that includes the full spectrum of scientific research 
                related to Lyme and other tick-borne diseases.
                    (D) The sponsoring of scientific conferences on 
                Lyme and other tick-borne diseases, including reporting 
                and consideration of the full spectrum of clinically 
                based knowledge, with the first of such conferences to 
                be held not later than 24 months after the date of the 
                enactment of this Act.
            (4) Clinical outcomes research.--
                    (A) The establishment of epidemiological research 
                objectives to determine the long-term course of illness 
                for Lyme disease.
                    (B) Determination of the effectiveness of different 
                treatment modalities by establishing treatment outcome 
                objectives.
    (c) Authorization of Appropriations.--For the purposes of carrying 
out this section and providing for additional research, prevention, and 
educational activities for Lyme and other tick-borne diseases, there is 
authorized to be appropriated $20,000,000 for each of fiscal years 2010 
through 2014. Such authorization of appropriations is in addition to 
any other authorization of appropriations available for such purpose. 
Of the amounts authorized to be appropriated under this subsection--
            (1) for fiscal year 2010, at least $7,500,000 shall be for 
        activities of the Centers for Disease Control and Prevention; 
        and
            (2) for each of fiscal years 2011 through 2014, at least 
        $5,000,000 shall be for activities of the Centers for Disease 
        Control and Prevention.

SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DISEASES.

    (a) In General.--Not later than 18 months after the date of the 
enactment of this Act, and annually thereafter, the Secretary shall 
submit to the Congress a report on the activities carried out under 
this Act.
    (b) Content.--Reports under subsection (a) shall contain--
            (1) a description of significant activities or developments 
        related to the surveillance, diagnosis, treatment, education, 
        or prevention of Lyme or other tick-borne diseases, including 
        suggestions for further research and education;
            (2) a scientifically qualified assessment of Lyme and other 
        tick-borne diseases, including both acute and chronic 
        instances, related to the broad spectrum of empirical evidence 
        of treating physicians, as well as published peer-reviewed 
        data, that shall include recommendations for addressing 
        research gaps in diagnosis and treatment of Lyme and other 
        tick-borne diseases and an evaluation of treatment guidelines 
        and their utilization;
            (3) a description of progress in the development of 
        accurate diagnostic tools that are more useful in the clinical 
        setting for both acute and chronic disease;
            (4) a description of activities for the promotion of public 
        awareness and physician education initiatives to improve the 
        knowledge of health care providers and the public regarding 
        clinical and surveillance practices for Lyme disease and other 
        tick-borne diseases; and
            (5) a copy of the most recent annual report issued by the 
        Tick-Borne Diseases Advisory Committee established in section 3 
        and an assessment of progress in achieving recommendations of 
        that Committee.
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