[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[S. 1905 Introduced in Senate (IS)]







106th CONGRESS
  1st Session
                                S. 1905

To establish a program to provide for a reduction in the incidence and 
                      prevalence of Lyme disease.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           November 10, 1999

Mr. Santorum (for himself, Mr. Dodd, Mr. Torricelli, Mr. Lieberman, Mr. 
 Schumer, and Mr. Lautenberg) introduced the following bill; which was 
 read twice and referred to the Committee on Health, Education, Labor, 
                              and Pensions

_______________________________________________________________________

                                 A BILL


 
To establish a program to provide for a reduction in the incidence and 
                      prevalence of Lyme disease.

    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 Disease Initiative of 1999''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) The incidence of Lyme disease in the United States is 
        increasing rapidly. The Centers for Disease Control and 
        Prevention (referred to in this Act as the ``CDC'') has 
        determined that, since 1982, there has been a 32-fold increase 
        in reported cases.
            (2) In 1998, a total of 15,934 cases of Lyme disease were 
        reported to CDC by 50 States and the District of Columbia (the 
        overall incidence was 6.06 per 100,000), representing a 24 
        percent increase from the 12,807 cases reported in 1997.
            (3) There is no reliable standardized diagnostic test for 
        chronic Lyme disease, and the test for acute Lyme disease 
        should be improved. As a result, the disease is underreported 
        or misreported by as much as 10 or 12 fold, according to some 
        studies, because the symptoms of Lyme disease mimic other 
        health conditions. Thus, precise figures on the incidence of 
        Lyme disease are difficult to develop.
            (4) Lyme disease costs our Nation between $1,000,000,000 
        and $2,000,000,000 in medical costs annually, according to 
        studies. Lost productivity annually per person from Lyme 
        disease has been estimated at 5 to 37 days.
            (5) Many health care providers lack the necessary knowledge 
        and expertise--particularly in non-endemic areas--to accurately 
        diagnose and prevent Lyme disease. As a result, patients often 
        visit multiple doctors before obtaining a diagnosis of the 
        disease, resulting in prolonged pain and suffering, unnecessary 
        tests, and costly, delayed, or futile treatments.
            (6) Due to scientific uncertainties about the diagnosis of 
        acute and chronic Lyme disease, and the proper course and 
        length of treatment, many patients have encountered 
        difficulties in obtaining needed insurance coverage for Lyme 
        disease.
            (7) Most Lyme disease infections are thought to result from 
        periresidential exposure to infected ticks during property 
        maintenance, recreation, and leisure activities. Thus, 
        individuals who live or work in residential areas surrounded by 
        woods or overgrown brush infested by vector ticks are at risk 
        of Lyme disease. In addition, persons who participate in 
        recreational activities away from home (such as hiking, 
        camping, fishing and hunting in tick habitat) and persons who 
        engage in outdoor occupations (such as landscaping, brush 
        clearing, forestry, military service, and wildlife and parks 
        management in endemic areas) may also be at risk of Lyme 
        disease. Some estimates indicate outdoor workers have a 4-to-4 
        fold elevation in risk of Lyme disease.

SEC. 3. PUBLIC HEALTH GOALS; 5-YEAR PLAN.

    (a) In General.--The Secretary of Health and Human Services (acting 
as appropriate through the Director of the Centers for Disease Control 
and Prevention, the Director of the National Institutes of Health, and 
the Commissioner of Food and Drugs), the Secretary of Agriculture, the 
Secretary of the Interior, and the Secretary of Defense (in this Act 
referred to collectively as the ``Secretaries'') shall collaborate to 
carry out the following:
            (1) The Secretaries shall establish the goals described in 
        subsections (c) through (g) relating to activities to provide 
        for a reduction in the incidence and prevalence of Lyme disease 
        and related tick-borne infectious diseases.
            (2) The Secretaries shall carry out activities toward 
        achieving the goals, which may include activities carried out 
        directly by the Secretaries and activities carried out through 
        awards of grants or contracts to public or nonprofit private 
        entities.
            (3) In carrying out paragraph (2), the Secretaries shall 
        give priority--
                    (A) first, to achieving the goal under subsection 
                (c);
                    (B) second, to achieving the goal under subsection 
                (d);
                    (C) third, to achieving the goal under subsection 
                (e);
                    (D) fourth, to achieving the goal under subsection 
                (f); and
                    (E) fifth, to achieving the goal under subsection 
                (g).
    (b) Five-Year Plan.--In carrying out subsection (a), the 
Secretaries shall establish a plan that, for the 5 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 subsections (c) through (g). The plan shall, as 
appropriate to such goals, provide for the coordination of programs and 
activities regarding Lyme disease that are conducted or supported by 
the Federal Government.
    (c) First Goal: Detection Test.--For purposes of subsection (a), 
the goal described in this subsection is the development of novel and 
more sensitive, specific, and reproducible diagnostic tests and 
procedures (or the improvement or refinement of existing tests) that--
            (1) can accurately determine whether an individual has 
        acute or chronic Lyme disease;
            (2) can accurately determine the activity of acute or 
        chronic Lyme disease infection or both;
            (3) can accurately distinguish acute or chronic Lyme 
        disease or both from other related, tick-borne, coinfectious 
        diseases; and
            (4) can accurately measure the responsiveness of acute or 
        chronic Lyme disease infection or both to treatment.
    (d) Second Goal: Improved Surveillance and Reporting System.--
            (1) In general.--For purposes of subsection (a), the goal 
        described in this subsection is to assess the medical, social, 
        and economic burden of Lyme disease in the United States. This 
        assessment shall include a review of the system in the United 
        States for surveillance and reporting with respect to Lyme 
        disease and a determination of whether and in what manner the 
        system can be improved.
            (2) Certain activities.--In carrying out activities toward 
        the goal described in paragraph (1), the Secretaries shall--
                    (A) consult with the States, the Conference of 
                State and Territorial Epidemiologists, units of local 
                government, physicians and health providers, patients 
                with Lyme disease, and organizations representing such 
                patients;
                    (B) consider whether uniform formats should be 
                developed for the reporting by physicians and 
                laboratories of cases of Lyme disease to public health 
                officials; and
                    (C) with respect to health conditions that are 
                reported by physicians as cases of Lyme disease but do 
                not meet the surveillance criteria established by the 
                Director of the Centers for Disease Control and 
                Prevention to be counted as such cases, consider 
                whether data on such health conditions should be 
                maintained and analyzed to assist in understanding the 
                circumstances in which Lyme disease is being diagnosed 
                and the manner in which it is being treated.
    (e) Third Goal: Lyme Disease Prevention; Development of 
Indicators.--For purposes of subsection (a), the goal described in this 
subsection is to reduce, through the use of effective public health 
education, prevention, and tick population reduction techniques, the 
incidence of Lyme disease in the 10 highest endemic States by 33 
percent by the date that is 5 years after the date of the enactment of 
this Act. In carrying out activities toward such goal, the Secretaries 
shall carry out each of the following:
            (1) Establish a baseline incidence rate of Lyme disease in 
        the 10 highest endemic States. The establishment of this 
        baseline must take into consideration the surveillance criteria 
        review specified in subsection (d).
            (2) Encourage the use of natural and nonpesticidal methods 
        to control and reduce tick populations, where appropriate.
            (3) Reduce the risks of Lyme disease at all federally owned 
        lands located in endemic States and regions, as well as at 
        locations known or suspected to pose a risk of Lyme disease to 
        patrons and employees, through the following:
                    (A) The development of standardized, periodic (not 
                less than 1 per year) Lyme disease risk assessments 
                that test and then categorize the overall level of risk 
                of Lyme disease at federally owned lands in endemic 
                States and regions. The Lyme disease risk assessments 
                shall be made available to the public in appropriate 
                forms, and may include such factors as--
                            (i) whether any human cases of Lyme disease 
                        have been diagnosed and treated on, or in areas 
                        adjacent to, the federally owned lands;
                            (ii) whether vectors capable of 
                        transmitting Lyme disease to humans are known 
                        to inhabit the federally owned land;
                            (iii) whether any such vectors present on 
                        the federally owned land are known to actually 
                        be infected with Lyme disease; and
                            (iv) the geographic distribution of Lyme 
                        disease risk within the federally owned land.
                    (B) The development and coordination of public 
                awareness programs to educate patrons, employees, and 
                health professionals at federally owned lands about the 
                risks of Lyme disease, all appropriate prevention 
                methods that can be used to reduce these risks, and 
                information about the symptoms and nature of the 
                disease.
                    (C) The use of appropriate habitat management and 
                integrated pest-control techniques to reduce the number 
                of tick-borne Lyme disease vectors in areas where 
                humans work or recreate.
    (f) Fourth Goal: Prevention of Tick-Borne Diseases Other Than 
Lyme.--For purposes of subsection (a), the goal described in this 
subsection is to develop the capabilities at the Centers for Disease 
Control and Prevention, within the Department of Defense, and in State 
and local health departments to implement adequate surveillance, 
improved diagnosis, and effective strategies for the prevention and 
control of tick-borne diseases other than Lyme disease. Such diseases 
may include Lyme-like illness, ehrlichiosis, babesiosis, other 
bacterial, viral and rickettsial diseases such as tularemia, tick-borne 
encephalitis, and Rocky Mountain Spotted Fever, respectively.
    (g) Fifth Goal: Improved Public and Physician Education.--For 
purposes of subsection (a), the goal described in this subsection is to 
improve the knowledge of physicians, health care providers, and the 
public regarding the best and most effective methods to prevent, 
diagnose, and treat Lyme disease and related tick-borne diseases.

SEC. 4. LYME DISEASE TASKFORCE.

    (a) In General.--Not later than 120 days after the date of 
enactment of this Act, there shall be established in accordance with 
this section an advisory committee to be known as the Lyme Disease 
Taskforce (in this section referred to as the ``Task Force'').
    (b) Duties.--The Task Force shall provide advice to the Secretaries 
with respect to achieving the goals under section 3, including advice 
on the plan under subsection (b) of such section. Nothing in this 
section may be construed as interfering with or undermining the peer 
review process for research programs and grants, and the Task Force 
shall take care that its activities complement existing interagency 
relationships and interdepartmental working groups to the maximum 
extent practicable.
    (c) Membership.--
            (1) Ex officio members.--The following officials (or their 
        designees) shall serve as ex officio members of the Task Force:
                    (A) The Director of the National Institute of 
                Allergy and Infectious Diseases.
                    (B) The Director of the National Institute of 
                Arthritis and Musculoskeletal and Skin Diseases.
                    (C) The Director of the National Institute of 
                Neurological Disorders and Stroke.
                    (D) The Director of the National Center for 
                Infectious Diseases.
                    (E) The Director of the Epidemiology Program 
                Office.
                    (F) The Director of the Public Health Practice 
                Program Office.
                    (G) The Commander of the United States Army Medical 
                Command.
                    (H) The Commander of the United States Army Center 
                for Health Promotion and Preventative Medicine.
                    (I) The Director of the Center for Biologics 
                Evaluation and Research.
                    (J) The Administrator of the Agricultural Research 
                Service.
                    (K) The Director of the National Park Service.
                    (L) The Director of the Fish and Wildlife Service.
                    (M) The Director of the Indian Health Service.
                    (N) The Chief Biologist of the Biological Resources 
                Division, United States Geological Survey.
            (2) Appointed members.--Appointments to the Task Force 
        shall be made in accordance with the following:
                    (A) Two members shall be research scientists with 
                demonstrated achievements in research related to Lyme 
                disease and related tick-borne diseases. The scientists 
                shall be appointed by the Secretary of Health and Human 
                Services (in this paragraph referred to as the 
                ``Secretary'') in consultation with the National 
                Academy of Sciences.
                    (B) Four members shall be representatives of 
                organizations whose primary emphasis is on research and 
                public education into Lyme disease and related tick-
                borne diseases. One representative from each of such 
                organizations shall be appointed by the Secretary in 
                consultation with the National Academy of Sciences.
                    (C) Two members shall be clinicians with extensive 
                experience in the treatment of individuals with chronic 
                Lyme disease and related tick-borne diseases. The 
                clinicians shall be appointed by the Secretary in 
                consultation with the Institute of Medicine and the 
                National Academy of Sciences.
                    (D) Two members shall be individuals who are the 
                parents, spouse, or legal guardians of a person or 
                persons that have contracted Lyme disease or a related 
                tick-borne disease. The individuals shall be appointed 
                by the Secretary in consultation with the ex officio 
                members under paragraph (1) and the four organizations 
                referred to in subparagraph (B).
                    (E) One member shall be a representative of the 
                Council of State and Territorial Epidemiologists.
                    (F) One member shall be a representative of the 
                National Association of County and City Health 
                Officials.
                    (G) One member shall be an epidemiologist of 
                demonstrated achievements in the field of epidemiology. 
                The epidemiologist shall be appointed by the Secretary 
                in consultation with the National Academy of Sciences.
    (d) Administrative Support; Terms of Service; Other Provisions.--
The following apply with respect to the Task Force:
            (1) The Task Force shall receive necessary and appropriate 
        administrative support from the Department of Health and Human 
        Services.
            (2) Members of the Task Force shall be appointed for the 
        duration of the Task Force.
            (3) From among the members appointed under subsection 
        (c)(2), the Task Force shall designate an individual to serve 
        as the chairperson of the Task Force.
            (4) The Task Force shall meet no less than 2 times per 
        year.
            (5) Members of the Task Force shall not receive additional 
        compensation for their service. Such members may receive 
        reimbursement for appropriate and additional expenses that are 
        incurred through service on the Task Force which would not have 
        incurred had they not been a member of the Task Force.
            (6) Any vacancy in the membership of the Task Force shall 
        be filled in the manner in which the original appointment was 
        made and does not affect the power of the remaining members to 
        carry out the duties of the Task Force.

SEC. 5. ANNUAL REPORTS.

    The Secretaries shall submit to the Congress periodic reports on 
the activities carried out under this Act and the extent of progress 
being made toward the goals established under section 3. The first such 
report shall be submitted not later than 18 months after the date of 
the enactment of this Act, and subsequent reports shall be submitted 
annually thereafter until the goals are met.

SEC. 6. AUTHORIZATION OF APPROPRIATIONS.

    (a) National Institutes of Health.--In addition to other 
authorizations of appropriations that are available for carrying out 
the purposes described in this Act and that are established for the 
National Institutes of Health, there are authorized to be appropriated 
to the Director of such Institutes for such purposes $8,000,000 for 
each of the fiscal years 2000 through 2004.
    (b) Centers for Disease Control and Prevention.--In addition to 
other authorizations of appropriations that are available for carrying 
out the purposes described in this Act and that are established for the 
Centers for Disease Control and Prevention, there are authorized to be 
appropriated to the Director of such Centers for such purposes 
$8,000,000 for each of the fiscal years 2000 through 2004.
    (c) Department of Defense.--In addition to other authorizations of 
appropriations that are available for carrying out the purposes 
described in this Act and that are established for the Department of 
Defense, there are authorized to be appropriated to the Secretary of 
Defense for such purposes $6,000,000 for each of the fiscal years 2000 
through 2004.
    (d) Department of Agriculture.--In addition to other authorizations 
of appropriations that are available for carrying out the purposes 
described in this Act and that are established for the Department of 
Agriculture, there are authorized to be appropriated to the Secretary 
of Agriculture for such purposes $1,500,000 for each of the fiscal 
years 2000 through 2004.
    (e) Department of Interior.--In addition to other authorizations of 
appropriations that are available for carrying out the purposes 
described in this Act and that are established for the Department of 
Interior, there are authorized to be appropriated to the Secretary of 
Interior for such purposes $1,500,000 million for each of the fiscal 
years 2000 through 2004.
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