[Congressional Record (Bound Edition), Volume 148 (2002), Part 15]
[Senate]
[Pages 21123-21124]
[From the U.S. Government Publishing Office, www.gpo.gov]




   LYME AND INFECTIOUS DISEASE INFORMATION AND FAIRNESS IN TREATMENT 
                               (LIFT) ACT

  Mr. REID. Mr. President, I ask unanimous consent that the HELP 
Committee be discharged from further consideration of S. 969, and the 
Senate proceed to its consideration.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The clerk will report the bill by title.
  The legislative clerk read as follows:

       A bill (S. 969) to establish a Tick-Borne Disorders 
     Advisory Committee, and for other purposes.

  There being no objection, the Senate proceeded to the consideration 
of the bill.
  Mr. DODD. Mr. President, it is with great pleasure that I rise today 
to signal the passage of important legislation designed to combat the 
devastating illness of Lyme disease. The objective of this bipartisan 
consensus legislation is simple--to put us on the path toward 
eradicating Lyme disease--a disease still unfamiliar to some Americans, 
but one that is all too familiar to those of us from Connecticut and 
the Northeast.
  The impact that Lyme disease can have on its victims is tremendous. 
The disease first achieved prominence in the 1980s in the state of 
Connecticut and got its name from the town of Lyme, CT. Today, 
Connecticut residents have the dubious distinction of being 10 times 
more likely to contract Lyme disease than the rest of the nation. 
However, Mr. President, the incidence of Lyme disease nationwide is on 
the rise. In fact, cases of Lyme disease have been reported by 49 
states and the District of Columbia. Since 1982, the number of Lyme 
disease cases reported to health officials numbers more than 145,000. 
However, reports indicate that the actual incidence of the disease may 
be many times greater than current figures suggest.
  Health problems experienced by those infected with Lyme disease can 
include facial paralysis, joint swelling, loss of coordination, 
irregular heartbeat, liver malfunction, depression, and memory loss. 
Because Lyme disease frequently mimics other conditions, patients often 
must visit multiple doctors before a proper diagnosis is made. This can 
result in prolonged pain and suffering, unnecessary tests, costly and 
futile treatments, and devastating emotional consequences for victims 
of Lyme disease and their families.
  The legislation that we pass today is a continuation of earlier 
efforts to stem the growth of Lyme disease and other tick-borne 
disorders. Through an amendment that I offered to the FY 1999 
Department of Defense appropriations bill, an additional $3 million was 
directed toward the DoD's Lyme disease research efforts. This signaled 
an important first step in the fight to increase our understanding of 
this disease, but clearly more remains to be done. The legislation we 
pass today further continues these efforts.
  Central to this legislation, is the creation of a federal advisory 
committee on Lyme disease and other tick-borne disorders. This advisory 
committee will bring together members of the scientific community, 
health care providers, and, most important, those most personally 
touched by this devastating disease, Lyme patients and their families 
themselves. It is my hope that the important work of this, the first 
federal advisory committee on Lyme disease, will lay out a concise and 
workable federal blueprint for combating this debilitating illness.
  Additionally, this legislation will establish clear goals for federal 
action designed to conquer Lyme disease and other tick-borne disorders. 
In laying out these goals, the legislation offers a framework for the 
federal government that includes research, treatment, and prevention 
efforts designed to stop the growth of Lyme disease and other tick-
borne disorders.
  The legislation passed by the United States Senate today also 
authorizes $10 million for federal activities related to the prevention 
and effective treatment of Lyme disease and other tick-borne disorders. 
This critically important funding will also provide needed research 
funding for vector-borne diseases, such as Lyme disease.
  I wish to thank my colleague from Pennsylvania, Senator Rick 
Santorum, the legislation's chief Republican cosponsor, for his 
steadfast support of this initiative. It is due to his support, the 
support of my colleagues on the Senate HELP Committee, and the support 
of the Lyme disease community that we are here today on the verge of 
significantly strengthening the federal commitment to eradicating Lyme 
disease. I pledge to continue to work with my colleagues to ensure 
vigorous and effective oversight of the legislation's implementation in 
order to ensure that our intent is fully realized.
  I think I can speak for all of my colleagues when I say that we look 
forward to the day when Lyme disease no longer causes so many to 
suffer. This legislation offers an important and critical step toward 
that laudable goal.
  Mr. REID. Mr. President, Senator Dodd has a substitute amendment at 
the desk, and I ask unanimous consent for its consideration; that the 
amendment be agreed to, and the motion to reconsider be laid upon the 
table; that the bill, as amended, be read three times, passed, and the 
motion to reconsider be laid upon the table; and that any statements 
relating to the matter be printed in the Record, with no intervening 
action or debate.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The amendment (No. 4894) was agreed to, as follows:

            (Purpose: To provide for a complete substitute)

       Strike all after the enacting clause and insert the 
     following:

     SECTION 1. 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. 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 disorders, such as 
     ehrlichiosis, babesiosis, and other strains of Borrelia. All 
     of these diseases in 1 patient makes diagnosis and treatment 
     more difficult.
       (6) 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) Persistence of symptomatology in many patients without 
     reliable testing makes treatment of patients more difficult.

     SEC. 2. ESTABLISHMENT OF A 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.
       (b) Duties.--The Committee shall advise the Secretary and 
     Assistant Secretary of Health regarding how to--
       (1) assure interagency coordination and communication and 
     minimize overlap regarding efforts to address tick-borne 
     disorders;
       (2) identify opportunities to coordinate efforts with other 
     Federal agencies and private

[[Page 21124]]

     organizations addressing tick-borne disorders; and
       (3) develop informed responses to constituency groups 
     regarding the Department of Health and Human Services' 
     efforts and progress.
       (c) Membership.--
       (1) Appointed members.--
       (A) In general.--The Secretary of Health and Human Services 
     shall appoint voting members to the Committee from among the 
     following member groups:
       (i) Scientific community members.
       (ii) Representatives of tick-borne disorder voluntary 
     organizations.
       (iii) Health care providers.
       (iv) 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.
       (v) Representatives of State and local health departments 
     and national organizations who represent State and local 
     health professionals.
       (B) Requirement.--The Secretary shall ensure that an equal 
     number of individuals are appointed to the Committee from 
     each of the member groups described in clauses (i) through 
     (v) of subparagraph (A).
       (2) Ex officio members.--The Committee shall have nonvoting 
     ex officio members determined appropriate by the Secretary.
       (d) Co-chairpersons.--The Assistant Secretary of Health 
     shall serve as the co-chairperson of the Committee with a 
     public co-chairperson chosen by the members described under 
     subsection (c). 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 co-
     chairpersons. Agenda items can be added at the request of the 
     Committee members, as well as the co-chairpersons. 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 24 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 accurate diagnostic 
     tools that are more useful in the clinical setting; and
       (B) 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 disorders.
       (i) Authorization of Appropriations.--There is authorized 
     to be appropriated to carry out this Act, $250,000 for each 
     of fiscal years 2003 and 2004. Amounts appropriated under 
     this subsection 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 (5 U.S.C. 
     App.), except that no voting member of the Committee shall be 
     a permanent salaried employee.

     SEC. 3. AUTHORIZATION FOR RESEARCH FUNDING.

       There are authorized to be appropriated $10,000,000 for 
     each of fiscal years 2003 through 2007 to provide for 
     research and educational activities concerning Lyme disease 
     and other tick-borne disorders, and to carry out efforts to 
     prevent Lyme disease and other tick-borne disorders.

     SEC. 4. GOALS.

       It is the sense of the Senate that, in carrying out this 
     Act, the Secretary of Health and Human Services (referred to 
     in this section as the ``Secretary''), acting as appropriate 
     in consultation with the Director of the Centers for Disease 
     Control and Prevention, the Director of the National 
     Institutes of Health, the Committee, and other agencies, 
     should consider carrying out the following:
       (1) Five-year plan.--It is the sense of the Senate that the 
     Secretary should consider the establishment of a plan that, 
     for the five fiscal years following the date of the enactment 
     of this Act, provides for the activities to be carried out 
     during such fiscal years toward achieving the goals under 
     paragraphs (2) through (4). The plan should, as appropriate 
     to such goals, provide for the coordination of programs and 
     activities regarding Lyme disease and other tick-borne 
     disorders that are conducted or supported by the Federal 
     Government.
       (2) First goal: diagnostic test.--The goal described in 
     this paragraph is to develop a diagnostic test for Lyme 
     disease and other tick-borne disorders for use in clinical 
     testing.
       (3) Second goal: surveillance and reporting of lyme disease 
     and other tick-borne disorders.--The goal described in this 
     paragraph is to accurately determine the prevalence of Lyme 
     disease and other tick-borne disorders in the United States.
       (4) Third goal: prevention of lyme disease and other tick-
     borne disorders.--The goal described in this paragraph is to 
     develop the capabilities at the Department of Health and 
     Human Services to design and implement improved strategies 
     for the prevention and control of Lyme disease and other 
     tick-borne diseases. Such diseases may include Masters' 
     disease, ehrlichiosis, babesiosis, other bacterial, viral and 
     rickettsial diseases such as tularemia, tick-borne 
     encephalitis, Rocky Mountain Spotted Fever, and bartonella, 
     respectively.
  The bill (S. 969), as amended, was read the third time and passed.

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