,,ib ,union ,calendar ,no4 #dbd #aacth ,,congress #b;d ,session ,h4 ,r4 #dgja ,report ,no4 #aac-egc ,,in ,,the ,,house ,,of ,,representatives ,may #ba1 #bjad ,mr4 ,gibson 7for himself1 ,mr4 ,courtney1 ,mr4 ,peterson1 ,mr4 ,smith of ,new ,jersey1 ,mr4 ,wolf1 and ,mr4 ,barletta7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,september #h1 #bjad ,additional sponsors3 ,mr4 ,welch1 ,mr4 ,sean ,patrick ,maloney of ,new ,york1 ,mr4 ,posey1 ,mr4 ,wittman1 ,ms4 ,schakowsky1 ,ms4 ,esty1 ,mr4 ,lance1 ,mr4 ,shimkus1 ,mr4 ,tonko1 ,mr4 ,barrow of ,georgia1 ,mr4 ,keating1 ,mr4 ,connolly1 ,ms4 ,shea-,porter1 and ,mr4 ,maffei ,september #h1 #bjad ,reported with amendments1 committed to the ,committee of the ,whole ,house on the ,state of the ,union1 and ordered to be printed ,strike out all after the enacting clause and insert the part printed in italic ,for text of introduced bill1 see copy of bill as introduced on ,may #ba1 #bjad ,a ,,bill ,to provide for scientific frameworks with respect to vector-borne diseases4 #a4 ,short title ,this ,act may be cited as the ,tick-,borne ,disease ,research ,accountability and ,transparency ,act of #bjad4 #b4 ,lyme disease and other tick-borne diseases ,title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended by adding at the end the following new part3 ,w ,lyme disease and other tick-borne diseases #cii,,oo4 ,research 7a7 ,in general ,the ,secretary shall conduct or support epidemiological1 basic1 translational1 and clinical research regarding ,lyme disease and other tick-borne diseases4 7b7 ,biennial reports ,the ,secretary shall ensure that each biennial report under section #djc includes information on actions undertaken by the ,national ,institutes of ,health to carry out subsection 7a7 with respect to ,lyme disease and other tick-borne diseases1 including an assessment of the progress made in improving the outcomes of ,lyme disease and such other tick-borne diseases4 #cii,,oo-#a4 ,working ,group 7a7 ,establishment ,the ,secretary shall establish a permanent working group1 to be known as the ,interagency ,lyme and ,tick-,borne ,disease ,working ,group 7in this section and section #cii,,oo-#b referred to as the ,working ,group71 to review all efforts within the ,department of ,health and ,human ,services concerning ,lyme disease and other tick-borne diseases to ensure interagency coordination1 minimize overlap1 and examine research priorities4 7b7 ,responsibilities ,the ,working ,group shall-- 7#a7 not later than #bd months after the date of enactment of this part1 and every #bd months thereafter1 develop or update a summary of-- 7,a7 ongoing ,lyme disease and other tick-borne disease research related to causes1 prevention1 treatment1 surveillance1 diagnosis1 duration of illness1 intervention1 and access to services and supports for individuals with ,lyme disease or other tick-borne diseases2 7,b7 advances made pursuant to such research2 7,c7 the engagement of the ,department of ,health and ,human ,services with persons that participate at the public meetings required by paragraph 7#e72 and 7,d7 the comments received by the ,working ,group at such public meetings and the ,secretary's response to such comments2 7#b7 ensure that a broad spectrum of scientific viewpoints is represented in each such summary2 7#c7 monitor ,federal activities with respect to ,lyme disease and other tick-borne diseases2 7#d7 make recommendations to the ,secretary regarding any appropriate changes to such activities2 and 7#e7 ensure public input by holding annual public meetings that address scientific advances1 research questions1 surveillance activities1 and emerging strains in species of pathogenic organisms4 7c7 ,membership 7#a7 ,in general ,the ,working ,group shall be composed of a total of #ad members as follows3 7,a7 ,federal members ,seven ,federal members1 consisting of one or more representatives of each of-- 7i7 the ,office of the ,assistant ,secretary for ,health2 7ii7 the ,food and ,drug ,administration2 7iii7 the ,centers for ,disease ,control and ,prevention2 7iv7 the ,national ,institutes of ,health2 and 7v7 such other agencies and offices of the ,department of ,health and ,human ,services as the ,secretary determines appropriate4 7,b7 ,non-,federal public members ,seven non-,federal public members1 consisting of representatives of the following categories3 7i7 ,physicians and other medical providers with experience in diagnosing and treating ,lyme disease and other tick-borne diseases4 7ii7 ,scientists or researchers with expertise4 7iii7 ,patients and their family members4 7iv7 ,nonprofit organizations that advocate for patients with respect to ,lyme disease and other tick-borne diseases4 7v7 ,other individuals whose expertise is determined by the ,secretary to be beneficial to the functioning of the ,working ,group4 7#b7 ,appointment ,the members of the ,working ,group shall be appointed by the ,secretary1 except that of the non-,federal public members under paragraph 7#a77;,b7-- 7,a7 one shall be appointed by the ,speaker of the ,house of ,representatives2 and 7,b7 one shall be appointed by the ,majority ,leader of the ,senate4 7#c7 ,diversity of scientific perspectives ,in making appointments under paragraph 7#b71 the ,secretary1 the ,speaker of the ,house of ,representatives1 and the ,majority ,leader of the ,senate shall ensure that the non-,federal public members of the ,working ,group represent a diversity of scientific perspectives4 7#d7 ,terms ,the non-,federal public members of the ,working ,group shall each be appointed to serve a #d-year term and may be reappointed at the end of such term4 7d7 ,meetings ,the ,working ,group shall meet as often as necessary1 as determined by the ,secretary1 but not less than twice each year4 7e7 ,reporting ,not later than #bd months after the date of enactment of this part1 and every #bd months thereafter1 the ,working ,group-- 7#a7 shall submit a report on its activities1 including an up-to-date summary under subsection 7b77#a7 and any recommendations under subsection 7b77#d71 to the ,secretary1 the ,committee on ,energy and ,commerce of the ,house of ,representatives1 and the ,committee on ,health1 ,education1 ,labor and ,pensions of the ,senate2 7#b7 shall make each such report publicly available on the website of the ,department of ,health and ,human ,services2 and 7#c7 shall allow any member of the ,working ,group to include in any such report minority views4 #cii,,oo-#b4 ,strategic plan ,not later than #c years after the date of enactment of this section1 and every #e years thereafter1 the ,secretary shall submit to the ,congress a strategic plan1 informed by the most recent summary under section #cii,,oo-#a7;b77#a71 for the conduct and support of ,lyme disease and tick-borne disease research1 including-- 7#a7 proposed budgetary requirements2 7#b7 a plan for improving outcomes of ,lyme disease and other tick-borne diseases1 including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections2 7#c7 a plan for improving diagnosis1 treatment1 and prevention2 7#d7 appropriate benchmarks to measure progress on achieving the improvements described in paragraphs 7#b7 and 7#c72 and 7#e7 a plan to disseminate each summary under section #cii,,oo-#a7;b77#a7 and other relevant information developed by the ,working ,group to the public1 including health care providers1 public health departments1 and other relevant medical groups4 4 ,amend the title so as to read3 ,a bill to provide for research with respect to ,lyme disease and other tick-borne diseases1 and for other purposes44 ,september #h1 #bjad ,reported with amendments1 committed to the ,committee of the ,whole ,house on the ,state of the ,union1 and ordered to be printed