,i #aafth ,,congress #ast ,session ,h4 ,r4 #hbf ,,in ,,the ,,house ,,of ,,representatives ,january #bh1 #bjai,mr4 ,smith of ,new ,jersey 7for himself1 ,ms4 ,bass1 and ,mr4 ,meeks7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce1 and in addition to the ,committees on ,foreign ,affairs1 and ,financial ,services1 for a period to be subsequently determined by the ,speaker1 in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned ,a ,,bill ,to facilitate effective research on and treatment of neglected tropical diseases1 including ,ebola1 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 of this ,act is as follows3 ,sec4 #a4 ,short title4 ,sec4 #b4 ,table of contents4 ,sec4 #c4 ,statement of policy4 ,sec4 #d4 ,findings4 ,sec4 #e4 ,definition4 ,sec4 #f4 ,rule of construction4 ,title ,i--,foreign affairs ,sec4 #aja4 ,expansion of ,united ,states ,agency for ,international ,development's ,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 diseases1 including ,ebola1 for the economic and social well-being for all people4 #d4 ,findings ,congress finds the following3 7#a7 ,the ,world ,health ,organization 7,,who7 has identified #ag neglected tropical diseases 7,n,t,ds74 ,approximately two billion people--almost one-third of the world's population--are at risk of contracting an ,,ntd1 and more than #a4d billion people are currently afflicted with one or more ,n,t,ds4 7#b7 ,in #bjac1 ,,who adopted a comprehensive resolution on ,n,t,ds recognizing that increased national and international investments in prevention and control of neglected tropical diseases have succeeded in improving health and social well-being in many countries4 7#c7 ,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 #ecd1jjj lives and #eg million 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 leading to stigma1 social discrimination1 and societal marginalization4 7#d7 ,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 one ,,ntd1 hookworm1 in children can result in a #dc-percent increase in future wage earnings4 7#e7 ,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 two endemic ,,ntd burdens1 and #cj countries carry six or more endemic ,n,t,ds4 7#f7 ,n,t,ds are not confined to the developing world1 however4 ,several ,,ntd outbreaks have been reported in the ,united ,states and other developed countries1 especially among the poor4 ,in the ,united ,states1 ,n,t,ds disproportionately affect people living in poverty1 and especially minorities1 including up to #b4h million ,african ,americans with toxocariasis and #cjj1jjj or more people1 mostly ,hispanic ,americans1 with ,chagas disease4 7#g7 ,in #bjad1 an outbreak of ,ebola ,virus ,diseases 7,ebola7 caused a pandemic that infected more than #bj1jjj people1 including more than #h1jjj deaths4 ,although not listed as an ,,ntd by the ,world ,health ,organization1 ,ebola shares the same characteristics as other ,n,t,ds by affecting people living under conditions of poverty and is concentrated almost exclusively in impoverished populations in the developing world4 ,even when the disease had spread to the ,united ,states and other developed countries1 it was contained and controlled by the well-equipped health systems in those areas4 7#h7 ,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#i7 ,research and development efforts are immediately needed for all ,n,t,ds1 especially those for which limited or no treatment currently exists4 7#aj7 ,critical to developing robust ,,ntd control strategies are epidemiological data that identify at-risk populations1 ensure appropriate treatment frequency1 and inform decisions about when treatment can be reduced or stopped4 7#aa7 ,of the #ad most common ,n,t,ds1 roughly #hj percent of infections are caused by soil-transmitted helminths 7,,sth7 and schistosomiasis4 ,,sth are a group of three parasitic worms 7roundworms1 whipworms1 and hookworms7 that afflict more than one billion people worldwide1 including #fjj million school-age children1 of whom more than #cjj million suffer from severe morbidity4 ,schistosomiasis is another helminth infection affecting at least #bjj million people in developing countries1 but some estimates indicate that the true number of people affected may be double or even triple that number4 7#ab7 ,the main health problems caused by ,,sth are related to their negative effect on childhood nutritional status1 which can cause stunting and wasting4 ,for example1 ,,sth infection may lead to anemia1 malabsorption of nutrients1 loss of appetite1 nausea1 abdominal pain1 diarrhea1 and reduced food intake4 ,when such health problems are experienced in early childhood1 a peak growth and development period1 the mental and physical damage--and loss of future productivity and wage-earning potential--will likely be irreversible4 ,schistosomiasis causes end-organ damage to the urinary tract1 female genital tract1 liver and intestines4 ,it also results in chronic health conditions in children4 7#ac7 ,,sth and schistosomiasis are also particularly detrimental to the health of women of reproductive age and pregnant women4 ,their underlying poor iron status makes these women most susceptible to developing anemia4 ,iron deficiency anemia resulting from hookworm infection during pregnancy has been linked to poor pregnancy outcomes such as prematurity1 low birth weight1 and impaired lactation4 ,female genital schistosmiasis may be one of the most common gynecologic conditions in ,africa leading to genital pain1 itching1 and bleeding and markedly increased susceptibility to ,,hiv_/,,aids4 7#ad7 ,fortunately1 there is a simple1 cost-effective solution to ,,sth and schistosomiasis infections3 single-dose deworming pills that can be safely administered once or twice annually to those at risk4 ,pharmaceutical companies have committed to donate the drugs needed to treat all at-risk1 school-age children in developing countries4 ,regular administration of deworming pills reduces morbidity associated with ,,sth and schistosomiasis infections by reducing prevalence and transmission rates4 7#ae7 ,improved access to water1 sanitation1 and hygiene 7,,wash7 can also reduce the transmission of ,n,t,ds1 particularly intestinal worms4 7#af7 ,the benefits of deworming are immediate and enduring4 ,a rigorous 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 half a year of schooling4 #e4 ,definition ,in this ,act1 the term neglected tropical diseases or ,n,t,ds-- 7#a7 means infections caused by pathogens1 including viruses1 bacteria1 protozoa1 and helminths that disproportionately impact individuals living in extreme poverty1 especially in developing countries2 and 7#b7 includes-- 7,a7 ,buruli ulcer 7,mycobacterium ,ulcerans infection72 7,b7 ,chagas disease2 7,c7 dengue or severe dengue fever2 7,d7 dracunculiasis 7,guinea worm disease72 7,e7 echinococcosis2 7,f7 foodborne trematodiases2 7,g7 human ,african trypanosomiasis 7sleeping sickness72 7,h7 leishmaniasis2 7,i7 leprosy2 7,j7 lymphatic filariasis 7elephantiasis72 7,k7 onchocerciasis 7river blindness72 7,l7 rabies2 7,m7 schistosomiasis2 7,n7 soil-transmitted helminthiases 7,,sth7 7round worm1 whip worm1 and hook worm72 7,o7 taeniasis_/cysticercosis2 7,p7 trachoma2 and 7,q7 yaws 7endemic treponematoses74 #f4 ,rule of construction ,nothing in this ,act shall be construed to increase authorizations of appropriations for the ,united ,states ,agency for ,international ,development or authorizations of appropriations for the ,department of ,health and ,human ,services4 ,i ,foreign affairs #aja4 ,expansion of ,united ,states ,agency for ,international ,development's ,neglected ,tropical ,diseases ,program 7a7 ,findings ,congress finds the following3 7#a7 ,since fiscal year #bjjf1 the ,united ,states ,government has been an essential leading partner in advancing control and elimination efforts for seven targeted neglected tropical diseases3 lymphatic filariasis 7elephantiasis71 onchocerciasis 7river blindness71 schistosomiasis1 soil-transmitted helminthiases 7,,sth7 7round worm1 whip worm1 and hook worm71 and trachoma4 ,additional information suggests that such efforts could also produce collateral benefits for at least three other ,n,t,ds3 foodborne trematodiases1 scabies1 and yaws 7endemic treponematoses74 7#b7 ,the ,united ,states ,agency for ,international ,development's 7,,usaid7 ,neglected ,tropical ,diseases ,program has made important and substantial contributions to the global fight to control and eliminate the seven most common ,n,t,ds4 ,leveraging more than #f4g billion in donated medicines1 ,,usaid has supported the distribution of more than one billion treatments in #be countries across ,africa1 ,asia1 and ,latin ,america and the ,caribbean4 7#c7 ,united ,states ,government leadership has been instrumental in maintaining the global fight against ,n,t,ds and is a partner in the ,london ,declaration on ,neglected ,tropical ,diseases 7#bjab71 which represents a new1 coordinated international push to accelerate progress toward eliminating or controlling #aj neglected tropical diseases by #bjbj4 7#d7 ,,usaid's ,neglected ,tropical ,diseases ,program is a clear example of a successful public-private partnership between the ,government and the private sector and should be judiciously expanded1 as practicable and appropriate4 7#e7 ,while many of the most common ,n,t,ds have treatments that are safe1 easy to use1 and effective1 treatment options for ,n,t,ds with the highest death rates1 including human ,african trypanosomiasis1 visceral leishmaniasis1 and ,chagas disease1 are extremely limited4 7#f7 ,since #bjad1 ,,usaid's ,neglected ,tropical ,diseases ,program has been investing in gathering research on treatment for certain ,n,t,ds to ensure that promising new breakthrough medicines can be rapidly evaluated1 registered1 and made available to patients4 7b7 ,sense of ,congress ,it is the sense of ,congress that ,,usaid's ,neglected ,tropical ,diseases ,program should-- 7#a7 provide integrated drug treatment packages to as many individuals suffering from ,n,t,ds or at risk of acquiring ,n,t,ds as logistically feasible2 7#b7 better integrate control and treatment tools and approaches for ,n,t,ds into complementary development and global health programs by coordinating across multiple sectors1 including sectors relating to ,,hiv_/,,aids1 malaria1 and other infectious diseases and development sectors relating to education 7including primary and pre-primary education71 food and nutrition security1 maternal and child health1 and water1 sanitation1 and hygiene 7,,wash71 as practicable and appropriate2 7#c7 establish low-cost1 high-impact community and school-based ,,ntd programs to reach large at-risk populations1 including school-age children who require treatments for ,n,t,ds1 with integrated drug treatment packages as feasible2 7#d7 for other ,n,t,ds1 such as human ,african trypanosomiasis 7sleeping sickness71 ,chagas disease1 leishmaniasis1 and dengue fever1 engage in research and development of new tools and approaches to reach the goals relating to the elimination of ,n,t,ds as set forth in the ,world ,health ,organization's ,accelerating ,work to ,overcome the ,global ,impact of ,neglected ,tropical ,diseases3 ,a ,roadmap for ,implementation 7#bjab71 as opportunities emerge and resources allow2 and 7#e7 monitor the research on and developments in the prevention and treatment of other ,n,t,ds so they can be incorporated into the program1 as practicable and appropriate4 7c7 ,program priorities ,the ,administrator of ,,usaid should incorporate the following priorities into ,,usaid's ,neglected ,tropical ,diseases ,program3 7#a7 ,planning for and conducting robust monitoring and evaluation of 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 ,,usaid development sectors1 including development sectors relating to education 7including primary and pre-primary education71 food and nutrition security1 and water1 sanitation1 and hygiene 7,,wash71 in order to advance the goals of the ,london ,declaration on ,neglected ,tropical ,diseases 7#bjab74 7#c7 ,including morbidity management in treatment plans for high-burden ,n,t,ds4 7#d7 ,incorporating ,n,t,ds that are recognized as high-burden diseases 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 research and development for new tools1 including diagnostics1 drugs1 and vaccines1 for ,n,t,ds to ensure that new discoveries make it through the pipeline and become available to individuals who need them most4 #ajb4 ,actions by ,department of ,state 7a7 ,office of the ,global ,,aids ,coordinator ,it is the sense of ,congress that the ,coordinator of ,united ,states ,government ,activities to ,combat ,,hiv_/,,aids ,globally should fully consider evolving research on the impact of neglected tropical diseases on efforts to control ,,hiv_/,,aids when making future programming decisions1 as necessary and appropriate4 7b7 ,global programming 7#a7 ,in general ,the ,secretary of ,state should encourage the ,global ,fund to take into consideration evolving research on the impact of ,n,t,ds on efforts to control ,,hiv_/,,aids when making programming decisions1 particularly with regard to female genital schistosomiasis1 which has been revealed as one of the most significant co-factors in the ,,aids epidemic in ,africa1 as necessary and appropriate4 7#b7 ,global ,fund ,in this subsection1 the term ,global ,fund means the public-private partnership known as the ,global ,fund to ,fight ,,aids1 ,tuberculosis and ,malaria established pursuant to ,article #hj of the ,swiss ,civil ,code4 7c7 ,g-#bj countries ,the ,secretary of ,state1 acting through the ,office of ,global ,health ,diplomacy1 should encourage ,g-#bj countries1 particularly ,argentina1 ,brazil1 ,china1 ,india1 ,indonesia1 ,mexico1 the ,republic of ,korea1 ,saudi ,arabia1 and ,south ,africa1 to significantly increase their role in the control and elimination of ,n,t,ds4 #ajc4 ,multilateral development and health institutions 7a7 ,congressional finding ,congress finds that the treatment of high burden neglected tropical diseases1 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 7,,sth7 7round worm1 whip worm1 and hook worm7 in particular4 7b7 ,united ,nations ,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 to take the actions described in subsection 7d74 7c7 ,world ,bank ,institute ,the ,president shall direct the ,united ,states ,executive ,director at the ,international ,bank for ,reconstruction and ,development to use the voice1 vote1 and influence of the ,united ,states to urge the ,world ,bank ,institute to take the actions described in subsection 7d74 7d7 ,actions described ,the actions described in this subsection are the following3 7#a7 ,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 fashion4 7#b7 ,highlight impacts of community and school-based deworming programs on children's health and education1 emphasizing the cost-effectiveness of such programs4 7#c7 ,encourage governments to implement deworming campaigns at the national level4 7#d7 ,designate a portion of grant funds of the institutions to deworming initiatives and cross-sectoral collaboration with water and sanitation and hygiene efforts and nutrition or education programming4 7#e7 ,encourage accurate monitoring and evaluation of ,,ntd programs1 including deworming programs4 7#f7 ,engage governments in cross-border initiatives for the treatment1 control1 prevention1 and elimination of ,n,t,ds1 and assist in developing transnational agreements1 when 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 #ab months after the date of 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 to the ,congress a report on neglected tropical diseases in the ,united ,states4 7b7 ,contents ,the report required by 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 the 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 of such ,act 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 make 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 elimination4 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 and 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 paragraph 7#a7 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 such patient care costs as 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 ,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 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 such group 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 to 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 diseases1 including ,ebola2 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 medicines 7in this section referred to as the panel74 7b7 ,strategies ,the panel 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 appoint as members of the panel 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 to ,congress and the ,secretary of ,health and ,human ,services a report on its findings and recommended strategies1 including 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 submitting the report required by subsection 7d74