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.

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 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.

Authorization for research funding

There is 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.

Goals

It is the sense of the Congress 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 Congress 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.