,,ii #aacth ,,congress #ast ,session ,s4 #gai ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,april #aa1 #bjac ,mr4 ,blumenthal 7for himself1 ,mrs4 ,gillibrand1 ,mr4 ,reed1 ,mr4 ,lautenberg1 ,mr4 ,whitehouse1 ,mr4 ,franken1 ,ms4 ,klobuchar1 and ,mr4 ,schumer7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to provide for the expansion of ,federal efforts concerning the prevention1 education1 treatment1 and research activities related to ,lyme and other tick-borne diseases1 including the establishment of a ,tick-,borne ,diseases ,advisory ,committee4 #a4 ,short title ,this ,act may be cited as the ,lyme and ,tick-,borne ,disease ,prevention1 ,education1 and ,research ,act of #bjac4 #b4 ,findings ,congress makes the following findings3 7#a7 ,lyme disease is a common but frequently misunderstood illness that1 if not caught early and treated properly1 can cause serious health problems4 7#b7 ,lyme disease is caused by the bacterium ,borrelia burgdorferi1 which belongs to the class of spirochetes1 and is transmitted to humans by the bite of infected black-legged ticks4 ,early signs of infection may include a rash and flu-like symptoms such as fever1 muscle aches1 headaches1 and fatigue4 7#c7 ,although ,lyme disease can be treated with antibiotics if caught early1 the disease often goes undetected because it mimics other illnesses or may be misdiagnosed4 ,untreated1 ,lyme disease can lead to severe heart1 neurological1 eye1 and joint problems because the bacteria can affect many different organs and organ systems4 7#d7 ,if an individual with ,lyme disease does not receive treatment1 such individual can develop severe heart1 neurological1 eye1 and joint problems4 7#e7 ,although ,lyme disease accounts for #ij percent of all vector-borne infections in the ,united ,states1 the ticks that spread ,lyme disease also spread other diseases1 such as anaplasmosis1 babesiosis1 and tularemia1 and carry ,bartonella and other strains of ,borrelia4 ,other tick species1 such as the aggressive lone star1 spread ehrlichiosis1 ,rocky ,mountain spotted fever1 and southern tick-associated rash illness 7,,stari74 ,multiple diseases in #a patient make diagnosis and treatment more difficult4 7#f7 ,the ,centers for ,disease ,control and ,prevention reported over #cc1jjj confirmed or probable ,lyme ,disease cases in #bjaa4 7#g7 ,according to the ,centers for ,disease ,control and ,prevention1 from #aiib to #bjjf1 the incidence of ,lyme disease was highest among children aged #e to #ad years of age4 7#h7 ,persistence of symptomatology in many patients without reliable testing makes diagnosis and treatment of patients more difficult4 #c4 ,establishment of a tick-borne diseases advisory committee 7a7 ,establishment ,not later than #ahj days after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services 7referred to in this ,act as the ,secretary7 shall establish within the ,office of the ,secretary an advisory committee to be known as the ,tick-,borne ,diseases ,advisory ,committee 7referred to in this section as the ,committee74 7b7 ,duties ,the ,committee shall-- 7#a7 advise the ,secretary and the ,assistant ,secretary for ,health regarding the manner in which such officials can-- 7,a7 ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases2 7,b7 identify opportunities to coordinate efforts with other ,federal agencies and private organizations addressing such diseases2 7,c7 ensure interagency coordination and communication with constituency groups2 7,d7 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 balanced2 and 7,e7 advise relevant ,federal agencies on priorities related to ,lyme and other tick-borne diseases2 and 7#b7 in coordination with relevant agencies within the ,department of ,health and ,human ,services1 regularly review published public and private treatment guidelines and evaluate such guidelines for effective representation of a wide diversity of views4 7c7 ,membership 7#a7 ,appointed members 7,a7 ,in general ,from among individuals who are not officers or employees of the ,federal ,government1 the ,secretary shall appoint to the ,committee1 as voting members1 the following3 7i7 ,not less than #d members from the scientific community representing the broad spectrum of viewpoints held within the scientific community related to ,lyme and other tick-borne diseases4 7ii7 ,not less than #b representatives of tick-borne disease voluntary organizations4 7iii7 ,not less than #b health care providers1 including not less than #a full-time practicing physician1 with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases4 7iv7 ,not less than #b 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 disease4 7v7 ,at least #b representatives of ,state and local health departments and national organizations that represent ,state and local health professionals4 7,b7 ,diversity ,in appointing members under this paragraph1 the ,secretary shall ensure that such members1 as a group1 represent a diversity of scientific perspectives relevant to the duties of the ,committee4 7#b7 ,ex officio members ,the ,secretary shall designate1 as nonvoting1 ex officio members of the ,committee1 representatives overseeing tick-borne disease activities from each of the following ,federal agencies3 7,a7 ,the ,centers for ,disease ,control and ,prevention4 7,b7 ,the ,national ,institutes of ,health4 7,c7 ,the ,agency for ,healthcare ,research and ,quality4 7,d7 ,the ,food and ,drug ,administration4 7,e7 ,the ,office of the ,assistant ,secretary for ,health4 7,f7 ,such additional ,federal agencies as the ,secretary determines to be appropriate4 7#c7 ,co-chairpersons ,the ,secretary shall designate the ,assistant ,secretary of ,health as the co-chairperson of the ,committee4 ,the appointed members of the ,committee shall also elect a public co-chairperson4 ,the public co-chairperson shall serve a #b-year term4 7#d7 ,term of appointment ,the term of service for each member of the ,committee appointed under paragraph 7#a7 shall be #d years4 7#e7 ,vacancy ,a vacancy in the membership of the ,committee shall be filled in the same manner as the original appointment4 ,any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term4 ,members may serve after the expiration of their terms until their successors have taken office4 7d7 ,meetings ,the ,committee shall hold public meetings1 except as otherwise determined by the ,secretary1 after providing notice to the public of such meetings1 and shall meet at least twice a year with additional meetings subject to the call of the co-chairpersons4 ,agenda items with respect to such meetings may be added at the request of the members of the ,committee1 including the co-chairpersons4 ,meetings shall be conducted1 and records of the proceedings shall be maintained1 as required by applicable law and by regulations of the ,secretary4 7e7 ,report ,not later than #a year after the date of enactment of this ,act1 and annually thereafter1 the ,committee1 acting through the members representing the ,centers for ,disease ,control and ,prevention and the ,national ,institutes of ,health1 shall submit a report to the ,secretary4 ,each such report shall contain1 at a minimum-- 7#a7 a description of the ,committee's functions2 7#b7 a list of the ,committee's members and their affiliations2 and 7#c7 a summary of the ,committee's activities and recommendations during the previous year1 including any significant issues regarding the functioning of the ,committee4 7f7 ,authorization of appropriations ,for the purpose of carrying out this section1 there is authorized to be appropriated such sums as may be necessary for each of the fiscal years #bjad through #bjah4 ,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 7#e ,u4,s4,c4 ,app471 except that no voting member of the ,committee shall be a permanent salaried employee4 #d4 ,federal activities related to the diagnosis1 surveillance1 prevention1 and research of lyme and other tick-borne diseases 7a7 ,in general ,the ,secretary1 acting as appropriate through the ,director of the ,centers for ,disease ,control and ,prevention1 the ,director of the ,national ,institutes of ,health1 the ,commissioner of ,food and ,drugs1 and the ,director of the ,agency for ,healthcare ,research and ,quality1 as well as additional ,federal agencies as the ,secretary determines to be appropriate1 and in consultation with the ,tick-,borne ,diseases ,advisory ,committee1 shall provide for-- 7#a7 the conduct or support of the activities described in subsection 7b72 and 7#b7 the coordination of all ,federal programs and activities related to ,lyme disease and other tick-borne diseases4 7b7 ,activities ,the activities described in this subsection are the following3 7#a7 ,development of diagnostic tests ,such activities include-- 7,a7 the development of sensitive and more accurate diagnostic tools and tests1 including a direct detection test for ,lyme disease capable of distinguishing active infection from past infection2 7,b7 improving the efficient utilization of diagnostic testing currently available to account for the multiple clinical manifestations of both acute and chronic ,lyme disease2 and 7,c7 providing for the timely evaluation of promising emerging diagnostic methods4 7#b7 ,surveillance and reporting ,such activities include surveillance and reporting of ,lyme and other tick-borne diseases-- 7,a7 to accurately determine the prevalence of ,lyme and other tick-borne diseases2 7,b7 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 for ,disease ,control and ,prevention in order to more accurately gauge disease incidence2 and 7,c7 to evaluate the feasibility of creating a national uniform reporting system including required reporting by laboratories in each ,state4 7#c7 ,prevention ,such activities include-- 7,a7 the provision and promotion of access to a comprehensive1 up-to-date clearinghouse of peer-reviewed information on ,lyme and other tick-borne diseases2 7,b7 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 public2 7,c7 the creation of a physician education program that includes the full spectrum of scientific research related to ,lyme and other tick-borne diseases1 and1 in coordination with the ,advisory ,committee established under section #c1 the publication of an annual report that evaluates published guidelines and current research available on ,lyme disease1 in order to best educate health professionals on the latest research and diversity of treatment options for ,lyme disease2 and 7,d7 the sponsoring of scientific conferences on ,lyme and other tick-borne diseases1 including reporting and consideration of the full spectrum of clinically based knowledge1 with the first of such conferences to be held not later than #bd months after the date of enactment of this ,act4 7#d7 ,clinical outcomes research ,such activities include-- 7,a7 the establishment of epidemiological research objectives to determine the long-term course of illness for ,lyme disease2 and 7,b7 determination of the effectiveness of different treatment modalities by establishing treatment outcome objectives4 7c7 ,authorization of appropriations 7#a7 ,in general ,for the purposes of carrying out this section1 and for the purposes of providing for additional research1 prevention1 and educational activities for ,lyme and other tick-borne diseases1 there is authorized to be appropriated such sums as may be necessary for each of the fiscal years #bjad through #bjah4 7#b7 ,additional amounts ,the authorization of appropriations under this subsection is in addition to any other authorization of appropriations available for the purposes described in paragraph 7#a74 #e4 ,reports on lyme and other tick-borne diseases 7a7 ,in general ,not later than #ah months after the date of enactment of this ,act1 and annually thereafter1 the ,secretary shall submit to ,congress a report on the activities carried out under this ,act4 7b7 ,content ,reports under subsection 7a7 shall contain-- 7#a7 significant activities or developments related to the surveillance1 diagnosis1 treatment1 education1 or prevention of ,lyme or other tick-borne diseases1 including suggestions for further research and education2 7#b7 a scientifically qualified assessment of ,lyme and other tick-borne diseases1 including both acute and chronic instances1 related to the broad spectrum of empirical evidence of treating physicians1 as well as published peer reviewed data1 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 utilization2 7#c7 progress in the development of accurate diagnostic tools that are more useful in the clinical setting for both acute and chronic disease2 7#d7 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 diseases2 and 7#e7 a copy of the most recent annual report issued by the ,tick-,borne ,diseases ,advisory ,committee established under section #c and an assessment of progress in achieving the recommendations included in the ,committee's report4