[Congressional Record Volume 149, Number 116 (Thursday, July 31, 2003)]
[Senate]
[Pages S10649-S10651]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. SANTORUM (for himself, Mr. Dodd, Mr. Chafee, Ms. Collins, 
        Mr. Kerry, Mr. Schumer, Mr. Reed, and Mr. Lieberman):
  S. 1527. A bill to establish a Tick-Borne Disorders Advisory 
Committee, and for other purposes; to the Committee on Health, 
Education, Labor, and Pensions.
  Mr. SANTORUM. Mr. President, I am proud to join my colleague, Senator 
Chris Dodd of Connecticut, in reintroducing bipartisan legislation to 
address the ruinous effects of America's most common tick-borne 
illness, Lyme disease.
  I thank the senior Senator from Connecticut for his long involvement 
and leadership on this very important public health issue. With 
thousands of Americans contracting Lyme disease each year, it is 
essential that we work aggressively to wage a comprehensive fight 
against Lyme and other tick-borne disorders, which cost our country 
dearly in the way of medical expenditures and human suffering. The 
current lack of physician knowledge about Lyme and the inadequacies of 
existing detection methods stand out as deficiencies in our efforts to 
combat Lyme, and only serve to compound this growing public health 
hazard.
  We have it within our capacity to finally deliver on promises made to 
Lyme patients and their families to better focus the federal 
government's efforts to detect and research a cure for Lyme. Toward the 
end of the last session of Congress, the Senate passed this 
legislation, but unfortunately the House of Representatives did not 
have the opportunity to consider it.
  This legislation represents years of work with the Lyme advocacy 
community to reach consensus how we can best move forward on this 
issue. The goal of our bill is for the federal government to develop 
more accurate and more reliable diagnostic tools, and to provide access 
to more effective treatment and ultimately a cure.
  Between 1991 and 1999, the annual number of reported cases of Lyme 
disease increased by an astonishing 72 percent. Even as this dramatic 
increase took place, poor coordination and the lack of proper funding 
have left too many questions unanswered.
  This legislation will seek to set a new course for our public health 
strategies toward Lyme by ensuring that the proper collaboration is 
taking place between the Federal government and the people it serves.
  With this consensus legislation we are calling for the formation of a 
Department of Health and Human Services Advisory Committee that will 
bring Federal agencies, such as the CDC and the NIH, to the table with 
patient organizations, clinicians, and members of the scientific 
community. This Committee will report its recommendations to the 
Secretary of HHS. It will ensure that all scientific viewpoints are 
given consideration at NIH and the CDC, and will give a voice to the 
patient community which has often been left out of the dialogue.
  Our legislation will also provide an additional $10 million each year 
over the next five years for public health agencies to work with 
researchers around the country to develop better diagnostic tests and 
to increase their efforts to educate the public about Lyme disease.
  I sincerely hope that our colleagues will join Senator Dodd and 
myself in this most worthy cause and cosponsor this important bill. 
Lyme disease patients and their families have waited too long for a 
responsive plan of action to address their suffering and needs.
  The tremendous efforts of the Lyme patient and advocacy community 
have been very helpful in raising awareness and mobilizing support for 
this issue, and for this both Senator Dodd and I thank them. I look 
forward to working with them, Senator Dodd, and our colleagues to enact 
into law strong legislation to help correct the mistakes of the past, 
and to give greater hope for the future by ensuring patients that the 
federal government is doing everything in its power to provide better 
treatments and ultimately a cure.
  I ask unanimous consent that the text of this bill be printed in the 
Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1527

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

     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--

[[Page S10650]]

       (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 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 2004 and 2005. 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 2004 through 2008 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.

  Mr. DODD. Mr. President, it is with great pleasure that I rise today 
to introduce legislation for the research, prevention, and treatment of 
Lyme disease. This bipartisan legislation works toward the goal of 
eradicating Lyme disease--a devastating disease that has particularly 
impacted those of us from Connecticut and the Northeast. The Senate 
showed its strong support for this legislation when it passed it in the 
last Congress by Unanimous Consent. It is my hope that the Senate will 
show this same support again to ensure the goals of this legislation 
are achieved.
  Lyme disease can be devastating to those it affects. 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 unfortunate distinction of being 10 times more likely to 
contract Lyme disease than the rest of the nation. However, 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 has exceeded 200,000. Even more disconcerting are 
reports indicating that the actual incidence of Lyme disease may be 
significantly greater than what is reported.
  Those infected with Lyme disease may experience a number of health 
problems including facial paralysis, joint swelling, loss of 
coordination, irregular heartbeat, liver malfunction, depression, and 
memory loss. Unfortunately, this devastating disease can often be 
misdiagnosed, due to the fact that the symptoms presented by Lyme 
disease often look similar to other conditions. The misdiagnosis of 
this often debilitating illness can result in prolonged pain and 
suffering, unnecessary tests, expensive treatments, as well as severe 
emotional consequences for victims and their families.
  The legislation we introduce today will build on earlier efforts to 
tackle the problem of Lyme disease and other tick-borne disorders. 
Through an amendment that I offered to the Fiscal Year 1999 Department 
of Defense (DoD) appropriations bill, an additional $3 million was 
directed toward DoD's research in this area. This was an important 
first step in the fight to increase our understanding of this disease, 
but much more remains to be done. This legislation will provide what is 
necessary to continue the effort to research, prevent and treat Lyme 
disease and other tick-borne disorders.
  A critical component of this legislation is the creation of a federal 
advisory committee on Lyme disease and other tick-borne disorders. This 
advisory committee, the first of its kind, will include members of the 
scientific community, health care providers, and most directly impacted 
by the disease, Lyme patients and their families. Among its activities, 
the committee will identify opportunities for coordination and 
communication between Federal agencies and private organizations in 
their efforts to combat Lyme disease.
  This legislation also includes other key elements designed to conquer 
Lyme disease and other tick-borne disorders. It provides a framework 
for the government to establish clear goals in the areas of research, 
treatment, and prevention of Lyme disease. Crucial to activities in 
each of these areas, is the fact that this legislation authorizes $10 
million in annual funding for federal activities related to the 
elimination of Lyme disease.
  I would like to thank my colleague from Pennsylvania, Senator Rick 
Santorum, the legislation's chief Republican cosponsor, for his 
dedicated

[[Page S10651]]

support of this important initiative. I look forward to continuing to 
work with Senator Santorum, my other colleagues, and the Lyme disease 
community to strengthen our efforts to eradicate Lyme disease. This 
legislation provides an important step toward reaching this laudable 
goal.
                                 ______