2000 
[DOCID: f:h2118ih.txt]






107th CONGRESS
  1st Session
                                H. R. 2118

 To establish a Tick-Borne Disorders Advisory Committee, and for other 
                               purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              June 8, 2001

Mr. Greenwood (for himself, Mrs. Lowey, Mr. Simmons, Mr. Baldacci, Mr. 
   Maloney of Connecticut, Mr. Kirk, and Mr. Larson of Connecticut) 
 introduced the following bill; which was referred to the Committee on 
                          Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
 To establish a Tick-Borne Disorders Advisory Committee, 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 ``Lyme and Infectious Disease 
Information and Fairness in Treatment (LIIFT) Act''.

SEC. 2. FINDINGS.

    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 a bacterial infection that is 
        transmitted by a tick bite. 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 disorders, such as 
        ehrlichiosis, babesiosis, and other strains of Borrelia. All of 
        these diseases in 1 patient makes diagnosis and treatment more 
        difficult.
            (6) According to the Centers for Disease Control and 
        Prevention, cases of this tick-borne disease have increased 25-
        fold since national surveillance of it began in 1982. Although 
        tick-borne disease cases have been reported in 49 States and 
        the District of Columbia, about 90 percent of the 15,000 cases 
        have been reported in the following 10 States: Connecticut, 
        Pennsylvania, New York, New Jersey, Rhode Island, Maryland, 
        Massachusetts, Minnesota, Delaware, and Wisconsin. Studies have 
        shown that the actual number of tick-borne disease cases are 
        approximately 10 times the amount reported due to poor 
        surveillance of the disease.
            (7) According to studies, Lyme disease costs our Nation 
        between $1,000,000,000 to $2,000,000,000 each year in increased 
        medical costs, lost productivity, prolonged pain and suffering, 
        unnecessary testing, and costly delays in diagnosis and 
        inappropriate treatment.
            (8) Patients with Lyme disease are increasingly having 
        difficulty obtaining diagnosis and treatment for the disease, 
        and being restored to health. Because of differences in medical 
        and scientific opinion, clinicians fear retaliation from 
        insurance companies and medical licensure boards based on their 
        diagnosis and treatment of patients.
            (9) A number of patients have difficulties in obtaining 
        insurance coverage for treatment of Lyme disease.
            (10) Despite 14 years of Federal funding, there is still no 
        test that can accurately determine infection so that proper 
        treatment is adequately achieved. Persistence of symptomatology 
        in many patients without reliable testing makes treatment of 
        patients more difficult.
            (11) According to the General Accounting Office, over the 
        past 10 years, the Centers for Disease Control and Prevention 
        has only increased its allocation for tick-borne research and 
        education by 7 percent, from $6,900,000 to $7,400,000. Over 
        that same period, the Centers for Disease Control and 
        Prevention's expenditures for infectious diseases rose 318 
        percent, from $70,800,000 to $296,000,000.
            (12) According to the General Accounting Office, over the 
        past 10 years, the National Institutes of Health have increased 
        expenditures almost every year, from $13,100,000 in fiscal year 
        1991 to $26,000,000 in fiscal year 2000.
            (13) The Lyme disease vaccine gained approval from the Food 
        and Drug Administration in 1998. Since that time, the Food and 
        Drug Administration has received over 1,000 adverse event 
reports on the vaccine, including reports of severe arthritic symptoms 
and even Lyme disease.

SEC. 3. PURPOSE.

    The purpose of this Act is to establish a Tick-Borne Disorders 
Advisory Committee that will--
            (1) provide a public voice regarding the direction and 
        activities of the governmental agencies that deal with Lyme 
        disease in order to create a better understanding and response 
        by the government to the public need regarding the disease;
            (2) assure communication and coordination regarding tick-
        borne disorder issues between agencies of the Department of 
        Health and Human Services, the biomedical community, and 
        voluntary organizations concerned; and
            (3) promote coordination of activities with the Social 
        Security Administration and Department of Defense.

SEC. 4. TICK-BORNE DISORDERS ADVISORY COMMITTEE.

    (a) Establishment of Committee.--Not later than 180 days after the 
date of enactment of this Act, there shall be established an advisory 
committee to be known as the Tick-Borne Disorders Advisory Committee 
(referred to in this Act as the ``Committee'') organized in the Office 
of the Secretary of Health and Human Services.
    (b) Duties.--The Committee shall advise the Secretary of Health and 
Human Services (in this Act referred to as the ``Secretary'') regarding 
how to--
            (1) provide public input on the public's needs regarding 
        tick-borne disorders, so that government agencies can more 
        effectively plan and execute their activities, thus improving 
        the response to public need;
            (2) assure interagency coordination and communication and 
        minimize overlap regarding tick-borne disorder issues;
            (3) identify opportunities to coordinate efforts with other 
        Federal agencies and tick-borne disorder national nonprofits; 
        and
            (4) develop informed responses to constituency groups 
        regarding the efforts and progress of the Department of Health 
        and Human Services.
    (c) Membership.--
            (1) In general.--The Secretary shall appoint 11 voting 
        members to the Committee of which--
                    (A) 3 shall be scientific community members, 
                including a researcher or public health official, with 
                demonstrated achievement in tick-borne education, 
                research, or advocacy, and extensive experience in 
                working with a diverse range of patients, patient 
                groups, and tick-borne non-profits;
                    (B) 3 shall be representatives of national tick-
                borne disorder voluntary organizations that advocate 
                for the public, as well as those suffering from or 
                providing medical care to patients with tick-borne 
                disorders;
                    (C) 3 shall be clinicians with extens
19b7
ive experience 
                in the diagnoses and treatment of tick-borne diseases 
                and with long-term experience, independent of an 
                individual practice or research, in working with 
                patients, patient groups, and tick-borne non-profits; 
                and
                    (D) 2 shall be patient representatives who are 
                individuals who have been diagnosed with tick-borne 
                illnesses or who have had an immediate family member 
                diagnosed with such illness.
            (2) Ex-officio representatives.--The Committee shall have 
        nonvoting ex-officio members of which--
                    (A) 2 shall be from the Centers for Disease Control 
                and Prevention, 1 of which shall be from the Viral and 
                Rickettsial Diseases Division of the Viral and 
                Rickettsial Zoonoses Branch;
                    (B) 1 shall be from the Food and Drug 
                Administration, Office of Special Health Issues, in the 
                Office of the Commissioner;
                    (C) 3 shall be from the National Institutes of 
                Health--
                            (i) 1 of which shall be from the Rocky 
                        Mountain Laboratories Microscopy Branch; and
                            (ii) 1 of which shall be a pathologist with 
                        the National Institutes of Health who has 
                        extensive experience in Lyme disease research 
                        and a demonstrated ability to work well with 
                        diverse groups in the patient, public, and 
                        health care provider communities;
                    (D) 1 shall be from the Health Resources and 
                Services Administration;
                    (E) 1 shall be from the Social Security 
                Administration;
                    (F) 1 shall be from the Department of Defense, 
                United States Army Center for Health Promotion and 
                Preventive Medicine;
                    (G) 1 shall be from the Health Care Financing 
                Administration; and
                    (H) any additional members shall be added from 
                other Departments if necessary to aid the Committee in 
                its overall goals.
    (d) Chairperson.--The Assistant Secretary for Health (Department of 
Health and Human Services) shall serve as the co-chairperson of the 
Committee with a public co-chairperson chosen by the members described 
under subsection (c)(1). The public co-chairperson shall serve a 2-year 
term and retain all voting rights.
    (e) Term of Appointment.--All members shall be appointed to serve 
on the Committee for 4 year terms.
    (f) Vacancy.--If there is a vacancy on the Committee, such position 
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.
    (g) Meetings.--The Committee shall hold public meetings, except as 
otherwise determined by the Secretary, giving notice to the public of 
such, and meet at least twice a year with additional meetings subject 
to the call of the Chairperson. Agenda items can be added at the 
request of the Committee members, as well as the Chairperson. Meetings 
shall be conducted, and records of the proceedings kept as required by 
applicable laws and Departmental regulations.
    (h) Reports.--
            (1) In general.--Not later than 18 months after the date of 
        enactment of this Act, and annually thereafter, the Secretary 
        shall submit to Congress a report on the activities carried out 
        under this Act.
            (2) Content.--Such reports shall describe--
                    (A) progress in the development of more accurate 
                diagnostic tools and tests;
                    (B) the development of the other seven categories 
                of case definitions;
                    (C) the promotion of public awareness and physician 
                education initiatives to improve the knowledge of 
                health care providers and the public regarding the best 
                and most effective methods to prevent, diagnose and 
                treat tick-borne disorders;
                    (D) the improved access to disability benefits 
                policies for people living with tick-borne disorders; 
                and
                    (E) recommendations for resolving differences in 
                medical and scientific opinion that have resulted in 
                the exceptional number of reviews of Lyme disease 
                clinicians by insurance companies and State medical 
                licensure boards.
    (i) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this Act, $250,000 for each of the fiscal 
years 2002 and 2003.

SEC. 5. CENTERS FOR DISEASE CONTROL AND PREVENTION.

    There are authorized to be appropriated for the Centers for Disease 
Control and Prevention--
            (1) $14,500,000 for each of the fiscal years 2002 and 2003 
        to enable such Centers to focus on developing better diagnostic 
        tools and tests, expanding educational efforts regarding other 
        tick-borne disorders beyond Lyme disease, and re-educating 
        clinicians, medical licensure boards, and health care insurers 
        about the inappropriate uses of the Lyme disease case 
        surveillance definition in the diagnosis and treatment of 
        patients; and
            (2) $7,000,000 for each of the fiscal years 2002 and 2003 
        to collaborate with the National Institutes of Health, the 
        Department of Defense, and other appropriate agencies for 
        further research on tick-borne disorders, including the study 
        of preventive methods to decrease exposure to such disorders.

SEC. 6. NATIONAL INSTITUTES OF HEALTH.

    The Director of the National Institutes of Health, in working with 
the Tick-Borne Disorders Advisory Committee established under this Act, 
and recognizing that tick-borne disorders affect multiple systems of 
the body, shall coordinate activities and research regarding tick-borne 
diseases across Institutes to encourage collaborative research.
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