[Congressional Record Volume 151, Number 102 (Monday, July 25, 2005)]
[Senate]
[Pages S8829-S8831]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DODD (for himself and Mr. Santorum):
  S. 1479. 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; to the 
Committee on Health, Education, Labor, and Pensions.
  Mr. DODD. Mr. President, I ask unanimous consent that the text of the 
bill be printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1479

       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 Disease 
     Prevention, Education, and Research Act of 2005''.

     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-

[[Page S8830]]

     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. Untreated, 
     Lyme disease can lead to severe heart, neurological, eye, and 
     joint problems because the bacteria can affect many different 
     organs and organ systems.
       (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 
     ehrlichiosis, babesiosis, and other strains of Borrelia. All 
     of these diseases in 1 patient makes diagnosis and treatment 
     more difficult.
       (6) Studies indicate that the actual number of tick-borne 
     disease cases are approximately 10 times the amount reported.
       (7) 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 
     are 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.--From among individuals who are not 
     officers or employees of the Federal Government, the 
     Secretary shall appoint to the Committee, as voting members, 
     an equal number of individuals from each of the groups 
     described in clauses (i) through (v) of subparagraph (B).
       (B) Groups.--The groups described in this subparagraph 
     include the following:
       (i) Scientific community members representing the broad 
     spectrum of viewpoints held within the scientific community 
     related to Lyme and other tick-borne diseases.
       (ii) Representatives of tick-borne disease voluntary 
     organizations.
       (iii) 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) 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) 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) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $250,000 for each of the fiscal years 2006 
     through 2009. 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 the coordination of all 
     Federal programs and activities related to Lyme and other 
     tick-borne diseases, including the activities described in 
     paragraphs (1) through (4) of subsection (a).
       (b) Activities.--The activities described in this 
     subsection are the following:
       (1) Development of diagnostic tests.--Such activities 
     include--
       (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; and
       (C) providing for the timely evaluation of promising 
     emerging diagnostic methods.
       (2) Surveillance and reporting.--Such activities include 
     surveillance and reporting of Lyme and other tick-borne 
     diseases--
       (A) to accurately determine the prevalence of Lyme and 
     other tick-borne disease;
       (B) to evaluate 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 of Disease Control and Prevention in 
     order to more accurately gauge disease incidence; and
       (C) to evaluate the feasibility of creating a national 
     uniform reporting system including required reporting by 
     laboratories in each State.
       (3) Prevention.--Such activities include--
       (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; and
       (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 enactment of this Act.
       (4) Clinical outcomes research.--Such activities include--
       (A) the establishment of epidemiological research 
     objectives to determine the long term course of illness for 
     Lyme disease; and
       (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 for the purposes of 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 the 
     fiscal years 2006 through 2010. Such authorization is in 
     addition to any other authorization of appropriations 
     available for such purpose.

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

       (a) 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.
       (b) Content.--Reports under subsection (a) shall contain--
       (1) 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

[[Page S8831]]

     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) progress in the development of accurate diagnostic 
     tools that are more useful in the clinical setting for both 
     acute and chronic disease; and
       (4) 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.

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