,,ii #aafth ,,congress #ast ,session ,s4 #bdha ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,september #ag1 #bjai,mr4 ,brown 7for himself and ,mr4 ,wicker7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to facilitate effective research on and treatment of neglected tropical diseases through coordinated domestic and international efforts4 #a4 ,short title ,this ,act may be cited as the ,end ,neglected ,tropical ,diseases ,act4 #b4 ,table of contents ,the table of contents for this ,act is as follows3 ,sec4 #a4 ,short title4,sec4 #b4 ,table of contents4,sec4 #c4 ,statement of policy4,sec4 #d4 ,findings4,sec4 #e4 ,definitions4,sec4 #f4 ,rule of construction4,title ,i--,foreign ,affairs,sec4 #aja4 ,united ,states ,agency for ,international ,development ,neglected ,tropical ,diseases ,program4,sec4 #ajb4 ,actions by ,department of ,state4,sec4 #ajc4 ,multilateral development and health institutions4,title ,,ii--,department of ,health and ,human ,services,sec4 #bja4 ,promoting efforts through interagency working groups and international forums4,sec4 #bjb4 ,report on neglected tropical diseases in the ,united ,states4,sec4 #bjc4 ,centers of excellence4,sec4 #bjd4 ,panel on worm infection solutions4 #c4 ,statement of policy ,it is the policy of the ,united ,states to support a broad range of implementation and research and development activities that work toward the achievement of cost-effective and sustainable treatment1 control and1 where possible1 elimination of neglected tropical diseases for the economic and social well-being of all people4 #d4 ,findings ,congress finds the following3 7#a7 ,the ,centers for ,disease ,control and ,prevention have identified #ag neglected tropical diseases 7referred to in this section as ,n,t,ds74 ,approximately #b1jjj1jjj1jjj people are at risk of contracting an ,,ntd1 and more than #a1jdj1jjj1jjj people are currently afflicted with #a or more ,n,t,ds4 7#b7 ,in #bjab1 the ,london ,declaration on ,neglected ,tropical ,diseases identified #aj ,n,t,ds with the potential to be controlled1 eliminated1 or eradicated by #bjbj4 7#c7 ,in #bjac1 the ,world ,health ,organization 7referred to in this section as ,,who7 adopted a comprehensive resolution on ,n,t,ds1 recognizing that increased national and international investments in prevention and control of these diseases have succeeded in improving health and social well-being in many countries4 ,,who's ,world ,health ,assembly maintains and updates a list of the diverse ,n,t,ds across the world4 7#d7 ,in its fourth ,update ,report1 published in #bjag1 ,,who reported significant progress in expanding ,,ntd interventions worldwide1 but challenges continue in-- 7,a7 developing improved evaluation and surveillance tools2 and 7,b7 maintaining sufficient funding to ensure that progress is sustained4 7#e7 ,n,t,ds have an enormous impact in terms of disease burden and quality of life4 ,n,t,ds cause the loss of up to #ahe1jjj lives and up to #b1ejj1jjj1jjj disability-adjusted life years each year4 ,n,t,ds surpass both malaria and tuberculosis in causing greater loss of life-years to disability and premature death4 ,many ,n,t,ds cause disfigurement and disability1 in addition to significant morbidity and mortality1 leading to stigma1 social discrimination1 and societal marginalization4 7#f7 ,n,t,ds create an economic burden of billions of dollars through the loss of productivity and high costs of health care required for treatment4 ,people afflicted by ,n,t,ds are less productive than their healthy counterparts4 ,n,t,ds jeopardize the ability of people to attend work and school1 or to produce at full capacity4 ,for example1 controlling #a ,,ntd 7hookworm7 in children can result in a #dc percent increase in future wage earnings4 7#g7 ,the social1 economic1 and health burden of ,n,t,ds falls primarily on low- and middle-income countries1 where access to safe water1 sanitation1 and health care is limited4 ,at least #ajj countries face #b endemic ,,ntd burdens1 and #cj countries carry six or more endemic ,n,t,ds4 ,all low-income countries are affected by at least #e ,n,t,ds1 and #adi countries and territories are affected by at least #a ,,ntd4 7#h7 ,n,t,ds are not confined to the developing world4 ,several ,n,t,ds have been reported in the ,united ,states and other developed countries4 ,in the ,united ,states1 ,n,t,ds disproportionately affect communities of color and the poor1 with up to #b1hej1jjj ,african ,americans suffering from toxocariasis and at least #cjj1jjj people1 who are mostly ,hispanic ,americans1 are afflicted with ,chagas disease4 7#i7 ,many ,n,t,ds can be controlled1 prevented1 and even eliminated using low-cost1 effective1 and feasible solutions4 ,understanding the economic burden of ,n,t,ds on productivity and health care costs can help to assure governments and donors that the resources directed toward ,n,t,ds represent a good investment4 7#aj7 ,research and development efforts are immediately needed for all ,n,t,ds1 especially to advance next-generation treatments1 interventions1 and diagnostics to ensure that countries endemic for ,n,t,ds are able to implement and sustain ,,ntd control programs4 7#aa7 ,epidemiological data that identify at-risk populations and ensure that these populations receive consistent and sufficient doses of treatment for their diseases are critical to developing robust ,,ntd control strategies4 7#ab7 ,the benefits of deworming are immediate4 ,a rigorous1 randomized controlled trial has shown school-based deworming treatment to reduce school absenteeism by #be percent4 ,school-based deworming also benefits young siblings and other children who live nearby but are too young to be treated1 leading to large cognitive improvements equivalent to #a_/b of a year of schooling4 7#ac7 ,improved access to water1 sanitation1 and hygiene can also reduce the transmission of ,n,t,ds1 particularly ,n,t,ds caused by parasites4 #e4 ,definitions ,in this ,act3 7#a7 ,global ,fund ,the term ,global ,fund means the public-private partnership known as the ,global ,fund to ,fight ,,aids1 ,tuberculosis1 and ,malaria established pursuant to ,article #hj of the ,swiss ,civil ,code4 7#b7 ,neglected tropical diseases2 ,n,t,ds ,the terms neglected tropical diseases and ,n,t,ds-- 7,a7 mean infections caused by pathogens1 including viruses1 bacteria1 protozoa1 and helminths1 that disproportionately impact individuals living in extreme poverty1 especially in developing countries2 and 7,b7 include-- 7i7 ,buruli ulcer2 7ii7 ,chagas disease2 7iii7 ,cysticercosis2 7iv7 ,dengue fever2 7v7 ,dracunculiasis 7,guinea worm disease72 7vi7 ,echinococcosis2 7vii7 ,fascioliasis2 7viii7 ,human ,african trypanosomiasis 7sleeping sickness72 7ix7 ,leishmaniasis2 7x7 ,leprosy 7,hansen's disease72 7xi7 ,lymphatic filariasis 7elephantiasis72 7xii7 ,onchocerciasis 7river blindness72 7xiii7 ,rabies2 7xiv7 ,schistosomiasis2 7xv7 ,soil-transmitted ,helminthiases 7,,sth71 such as round worm1 whip worm1 and hook worm2 7xvi7 ,trachoma2 and 7xvii7 ,yaws4 #f4 ,rule of construction ,nothing in this ,act may be construed to increase the authorization of appropriations for-- 7#a7 the ,united ,states ,agency for ,international ,development2 or 7#b7 the ,department of ,health and ,human ,services4 ,i ,foreign ,affairs #aja4 ,united ,states ,agency for ,international ,development ,neglected ,tropical ,diseases ,program 7a7 ,findings ,congress finds the following3 7#a7 ,since fiscal year #bjjf1 the ,united ,states ,agency for ,international ,development 7referred to in this title as ,,usaid7 has been an essential leading partner in advancing control and elimination efforts for #e targeted neglected tropical diseases3 lymphatic filariasis 7elephantiasis71 onchocerciasis 7river blindness71 schistosomiasis1 soil-transmitted helminthiases 7round worm1 whip worm1 and hook worm71 and trachoma4 7#b7 ,,usaid is an original endorser of the ,london ,declaration on ,neglected ,tropical ,diseases1 signed in ,london on ,january #cj1 #bjab1 which represents a new1 coordinated international push to accelerate progress toward eliminating or controlling #aj ,n,t,ds by #bjbj4 7#c7 ,the ,,usaid ,neglected ,tropical ,diseases ,program has made important and substantial contributions to the global fight to control and eliminate the #e targeted ,n,t,ds4 ,leveraging more than #ai1jjj1jjj1jjj in donated medicines1 ,,usaid has supported the distribution of more than #b1cjj1jjj1jjj treatments in #ca countries across ,africa1 ,asia1 ,latin ,america1 and the ,caribbean4 7#d7 ,since #bjad1 the ,,usaid ,neglected ,tropical ,diseases ,program has been investing in gathering research and development for the treatment of certain ,n,t,ds to ensure that promising new breakthrough diagnostics and medicines can be rapidly evaluated1 registered1 and made available to patients4 7#e7 ,the ,,usaid ,neglected ,tropical ,diseases ,program-- 7,a7 is a clear example of a successful public-private partnership between the ,government and the private sector2 and 7,b7 already has contributed to the elimination of at least #a ,,ntd in #i different countries4 7b7 ,sense of ,congress ,it is the sense of ,congress that the ,,usaid ,neglected ,tropical ,diseases ,program1 as in effect on the date of the enactment of this ,act-- 7#a7 should be continued and may be judiciously expanded1 as practicable and appropriate2 7#b7 should continue to provide treatment to as many individuals suffering from an ,,ntd or at risk of acquiring an ,,ntd1 including individuals displaced by manmade and natural disasters1 as logistically feasible2 7#c7 should integrate ,,ntd control1 treatment tools1 and approaches into complementary development and global health programs by coordinating1 to the extent practicable and appropriate1 across multiple sectors1 including sectors relating to ,,hiv_/,,aids1 malaria1 tuberculosis1 education1 nutrition1 other infectious diseases1 maternal and child health1 and water1 sanitation1 and hygiene2 7#d7 should continue to conduct low-cost1 high-impact community and school-based ,,ntd programs to reach large at-risk populations1 including school-age children1 with integrated drug treatment packages1 as feasible2 7#e7 should engage in research and development of new tools and approaches1 as opportunities emerge and resources allow1 to reach the goals relating to the elimination of ,n,t,ds set forth by the ,world ,health ,organization2 and 7#f7 should monitor research on and developments in the prevention and treatment of other ,n,t,ds so breakthroughs can be incorporated into the ,,usaid ,neglected ,tropical ,diseases ,program1 as practicable and appropriate4 7c7 ,program priorities ,the ,administrator of ,,usaid should incorporate the following priorities into ,,usaid's ,neglected ,tropical ,diseases ,program 7as in effect on the date of the enactment of this ,act73 7#a7 ,planning for1 and conducting robust monitoring and evaluation of1 program investments in order to accurately measure impact1 identify and share lessons learned1 and inform future ,,ntd control and elimination strategies4 7#b7 ,coordinating program activities with complementary ,,usaid development and global health programs1 including programs relating to water1 sanitation1 and hygiene1 food and nutrition security1 and primary and secondary education in order to advance the goals of the ,london ,declaration on ,neglected ,tropical ,diseases4 7#c7 ,including morbidity management in ,national ,,ntd ,master ,plans4 7#d7 ,incorporating ,n,t,ds included in the ,global ,burden of ,disease ,study #bjaj into the program as opportunities emerge1 to the extent practicable and appropriate4 7#e7 ,continuing investments in the research and development of new tools and approaches that-- 7,a7 complement existing research investments2 and 7,b7 ensure that new discoveries make it through the pipeline and become available to individuals who need them4 #ajb4 ,actions by ,department of ,state 7a7 ,sense of ,congress ,it is the sense of ,congress that the ,coordinator of ,united ,states ,government ,activities to ,combat ,,hiv_/,,aids ,globally should fully consider1 as necessary and appropriate1 evolving research on the impact of neglected tropical diseases on efforts to control ,,hiv_/,,aids when making future programming decisions4 7b7 ,global programming ,the ,secretary of ,state should encourage the ,global ,fund to consider1 as necessary and appropriate1 evolving research on the impact of ,n,t,ds on efforts to control ,,hiv_/,,aids1 tuberculosis1 and malaria when making programming decisions1 particularly with regard to female genital schistosomiasis1 which studies suggest may be a significant co-factor in the ,,aids epidemic in ,africa4 7c7 ,g-#bj countries ,the ,secretary of ,state1 acting through the ,office of ,global ,health ,diplomacy1 should encourage ,g-#bj countries to significantly increase their role in the control and elimination of ,n,t,ds4 #ajc4 ,multilateral development and health institutions 7a7 ,finding ,congress finds that the treatment of ,n,t,ds1 including community and school-based deworming programs1 can be a highly cost-effective education intervention and schools can serve as an effective delivery mechanism for reaching large numbers of children with safe treatment for soil-transmitted helminthiases 7round worm1 whip worm1 and hook worm74 7b7 ,sense of ,congress ,the ,president should direct the ,united ,states ,permanent ,representative to the ,united ,nations to use the voice1 vote1 and influence of the ,united ,states to urge the ,world ,health ,organization and the ,united ,nations ,development ,programme-- 7#a7 to ensure the dissemination of best practices and programming on ,n,t,ds to governments and make data accessible to practitioners in an open and timely fashion2 7#b7 to highlight impacts of community and school-based deworming programs on children's health and education1 emphasizing the cost-effectiveness of such programs2 7#c7 to encourage governments to establish and implement national ,,ntd programs2 7#d7 to consider designating a portion of grant funds of the institutions to deworming initiatives and cross-sectoral collaboration with water1 sanitation1 and hygiene efforts and nutrition or education programming1 as practicable and appropriate2 7#e7 to encourage accurate monitoring and evaluation of ,,ntd programs1 including deworming programs2 and 7#f7 to engage governments in cross-border initiatives for the treatment1 control1 prevention1 and elimination of ,n,t,ds1 and assist in developing transnational agreements1 when and where necessary4 ,,ii ,department of ,health and ,human ,services #bja4 ,promoting efforts through interagency working groups and international forums ,the ,secretary of ,health and ,human ,services shall continue to promote the need for robust programs and activities to diagnose1 prevent1 control1 and treat neglected tropical diseases-- 7#a7 through interagency working groups on health2 and 7#b7 through relevant international forums on behalf of the ,united ,states1 including the post-#bjae ,united ,nations development agenda4 #bjb4 ,report on neglected tropical diseases in the ,united ,states 7a7 ,in general ,not later than #a year after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services1 acting through relevant agencies of the ,department of ,health and ,human ,services1 shall submit a report to the ,congress on neglected tropical diseases in the ,united ,states4 7b7 ,contents ,the report required under this section shall-- 7#a7 assess the epidemiology of1 impact of1 and appropriate funding required to address1 neglected tropical diseases in the ,united ,states2 and 7#b7 include information necessary-- 7,a7 to guide future health policy with respect to such diseases2 7,b7 to accurately evaluate the current state of knowledge concerning such diseases2 and 7,c7 to define gaps in such knowledge4 #bjc4 ,centers of excellence ,part ,p of title ,,iii of the ,public ,health ,service ,act is amended by inserting after section #cii,v-#f 7#db ,u4,s4,c4 #bhj;g-#ag7 the following3 #cii,v-#g4 ,neglected tropical disease centers of excellence 7a7 ,cooperative agreements and grants 7#a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 may enter into cooperative agreements with1 and award grants to1 public or private nonprofit entities to pay all or part of the cost of planning1 establishing1 or strengthening1 and providing basic operating support for1 one or more centers of excellence for research into1 training in1 and development of diagnosis1 prevention1 control1 and treatment methods for neglected tropical diseases1 including tools to support elimination by building capacity for sustainable prevention efforts once epidemiology has been characterized and initial control achieved4 7#b7 ,eligibility ,to be eligible for a cooperative agreement or grant under this section1 an entity must-- 7,a7 have demonstrated expertise in research on1 or the epidemiology and surveillance of1 major neglected tropical diseases that are endemic to the ,united ,states1 such as ,chagas disease1 dengue1 leishmaniasis1 ,west ,nile virus1 and helminth infections2 and 7,b7 participate in one or more not-for-profit product development partnerships4 7b7 ,policies ,a cooperative agreement or grant under subsection 7a7 shall be entered into or awarded in accordance with established policies4 7c7 ,coordination ,the ,secretary shall ensure that activities under this section are coordinated with similar activities of the ,department of ,health and ,human ,services relating to neglected tropical diseases4 7d7 ,uses of funds ,a cooperative agreement or grant under subsection 7a7 may be used for-- 7#a7 staffing1 administrative1 and other basic operating costs1 including patient care costs that are required for research2 7#b7 clinical training1 including training for allied health professionals1 continuing education for health professionals and allied health professions personnel1 and information programs for the public with respect to neglected tropical diseases2 and 7#c7 research and development programs4 7e7 ,period of support2 additional periods 7#a7 ,in general ,except as provided in paragraph 7#b71 support of a center of excellence under this section may be for a period of not more than #e years4 7#b7 ,extensions ,the period specified in paragraph 7#a7 may be extended by the ,secretary for additional periods of not more than #e years each if-- 7,a7 the operations of the center of excellence involved have been reviewed by an appropriate technical and scientific peer review group2 and 7,b7 group referred to in subparagraph 7,a7 has recommended to the ,secretary that such period should be extended4 7f7 ,definitions ,in this section3 7#a7 ,the term neglected tropical diseases has the meaning given that term in section #e of the ,end ,neglected ,tropical ,diseases ,act4 7#b7 ,the term product development partnership means a partnership to bring together public and private sector researchers to develop new1 or improve on current1 global health tools1 such as drugs1 diagnostics1 insecticides1 vaccines1 and vector management strategies-- 7,a7 that are for neglected tropical diseases2 and 7,b7 for which there is generally no profitable market4 4 #bjd4 ,panel on worm infection solutions 7a7 ,establishment ,the ,secretary of ,health and ,human ,services shall establish a panel to conduct an evaluation of issues relating to worm infections1 including potential solutions such as deworming medicines4 7b7 ,strategies ,the panel established pursuant to subsection 7a7 shall develop recommendations for strategies for solutions with respect to-- 7#a7 repeat infections2 7#b7 vector control2 7#c7 clean water solutions2 7#d7 identifying incentives to encourage basic research for less toxic1 more effective medicines2 and 7#e7 improving the success and cost efficiency of current programs in these areas1 based on a thorough scan of initiatives already underway in both the public and private sectors4 7c7 ,appointment of members ,in addition to representatives from the ,centers for ,disease ,control and ,prevention and other relevant agencies working on neglected tropical diseases1 the ,secretary of ,health and ,human ,services shall appoint1 as members of the panel established pursuant to subsection 7a71 individuals from the public and private sectors who are knowledgeable about or affected by worm infections1 including-- 7#a7 at least #b representatives of nongovernmental organizations2 7#b7 at least #b representatives of private industry involved in the development of de-worming medications2 7#c7 at least #b representatives from academia2 and 7#d7 representatives of industries relating to sanitation1 clean water1 and vector control4 7d7 ,report ,not later than #a year after the date of the enactment of this ,act1 the panel shall submit a report to ,congress and to the ,secretary of ,health and ,human ,services that includes-- 7#a7 the findings and recommended strategies of the panel2 and 7#b7 recommendations for such administrative action and legislation as the panel determines to be appropriate4 7e7 ,termination ,the panel shall terminate not later than #f months after the submission of the report required under subsection 7d74