End Neglected Tropical Diseases Act

I 116TH CONGRESS 1ST SESSION H. R. 826 To facilitate effective research on and treatment of neglected tropical diseases, including Ebola, through coordinated domestic and international efforts. IN THE HOUSE OF REPRESENTATIVES JANUARY 28, 2019 Mr. SMITH of New Jersey (for himself, Ms. BASS, and Mr. MEEKS) introduced the following bill; which was referred to the Committee on Energy and Commerce, and in addition to the Committees on Foreign Affairs, and Financial Services, for a period to be subsequently determined by the Speaker, 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 diseases, including Ebola, through coordinated domestic and international efforts. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘End Neglected Trop- 4 ical Diseases Act’’. 5 SEC. 2. TABLE OF CONTENTS. 6 The table of contents of this Act is as follows: 7 Sec. 1. Short title. VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6211 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 2 •HR 826 IH Sec. 2. Table of contents. Sec. 3. Statement of policy. Sec. 4. Findings. Sec. 5. Definition. Sec. 6. Rule of construction. TITLE I—FOREIGN AFFAIRS Sec. 101. Expansion of United States Agency for International Development’s Neglected Tropical Diseases Program. Sec. 102. Actions by Department of State. Sec. 103. Multilateral development and health institutions. TITLE II—DEPARTMENT OF HEALTH AND HUMAN SERVICES Sec. 201. Promoting efforts through interagency working groups and inter- national forums. Sec. 202. Report on neglected tropical diseases in the United States. Sec. 203. Centers of excellence. Sec. 204. Panel on worm infection solutions. SEC. 3. STATEMENT OF POLICY. 1 It is the policy of the United States to support a 2 broad range of implementation and research and develop- 3 ment activities that work toward the achievement of cost- 4 effective and sustainable treatment, control and, where 5 possible, elimination of neglected tropical diseases, includ- 6 ing Ebola, for the economic and social well-being for all 7 people. 8 SEC. 4. FINDINGS. 9 Congress finds the following: 10 (1) The World Health Organization (WHO) has 11 identified 17 neglected tropical diseases (NTDs). 12 Approximately two billion people—almost one-third 13 of the world’s population—are at risk of contracting 14 an NTD, and more than 1.4 billion people are cur- 15 rently afflicted with one or more NTDs. 16 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 3 •HR 826 IH (2) In 2013, WHO adopted a comprehensive 1 resolution on NTDs recognizing that increased na- 2 tional and international investments in prevention 3 and control of neglected tropical diseases have suc- 4 ceeded in improving health and social well-being in 5 many countries. 6 (3) NTDs have an enormous impact in terms of 7 disease burden and quality of life. NTDs cause the 8 loss of up to 534,000 lives and 57 million disability- 9 adjusted life years each year. NTDs surpass both 10 malaria and tuberculosis in causing greater loss of 11 life-years to disability and premature death. Many 12 NTDs cause disfigurement and disability, leading to 13 stigma, social discrimination, and societal marginali- 14 zation. 15 (4) NTDs create an economic burden of billions 16 of dollars through the loss of productivity and high 17 costs of health care required for treatment. People 18 afflicted by NTDs are less productive than their 19 healthy counterparts. NTDs jeopardize the ability of 20 people to attend work and school, or to produce at 21 full capacity. For example, controlling one NTD, 22 hookworm, in children can result in a 43-percent in- 23 crease in future wage earnings. 24 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 4 •HR 826 IH (5) The social, economic, and health burden of 1 NTDs falls primarily on low- and middle-income 2 countries, where access to safe water, sanitation, 3 and health care is limited. At least 100 countries 4 face two endemic NTD burdens, and 30 countries 5 carry six or more endemic NTDs. 6 (6) NTDs are not confined to the developing 7 world, however. Several NTD outbreaks have been 8 reported in the United States and other developed 9 countries, especially among the poor. In the United 10 States, NTDs disproportionately affect people living 11 in poverty, and especially minorities, including up to 12 2.8 million African Americans with toxocariasis and 13 300,000 or more people, mostly Hispanic Americans, 14 with Chagas disease. 15 (7) In 2014, an outbreak of Ebola Virus Dis- 16 eases (Ebola) caused a pandemic that infected more 17 than 20,000 people, including more than 8,000 18 deaths. Although not listed as an NTD by the World 19 Health Organization, Ebola shares the same charac- 20 teristics as other NTDs by affecting people living 21 ‘‘under conditions of poverty’’ and is ‘‘concentrated 22 almost exclusively in impoverished populations in the 23 developing world’’. Even when the disease had 24 spread to the United States and other developed 25 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 5 •HR 826 IH countries, it was contained and controlled by the 1 well-equipped health systems in those areas. 2 (8) Many NTDs can be controlled, prevented, 3 and even eliminated using low-cost, effective, and 4 feasible solutions. Understanding the economic bur- 5 den of NTDs on productivity and health care costs 6 can help to assure governments and donors that the 7 resources directed toward NTDs represent a good 8 investment. 9 (9) Research and development efforts are imme- 10 diately needed for all NTDs, especially those for 11 which limited or no treatment currently exists. 12 (10) Critical to developing robust NTD control 13 strategies are epidemiological data that identify at- 14 risk populations, ensure appropriate treatment fre- 15 quency, and inform decisions about when treatment 16 can be reduced or stopped. 17 (11) Of the 14 most common NTDs, roughly 18 80 percent of infections are caused by soil-trans- 19 mitted helminths (STH) and schistosomiasis. STH 20 are a group of three parasitic worms (roundworms, 21 whipworms, and hookworms) that afflict more than 22 one billion people worldwide, including 600 million 23 school-age children, of whom more than 300 million 24 suffer from severe morbidity. Schistosomiasis is an- 25 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 6 •HR 826 IH other helminth infection affecting at least 200 mil- 1 lion people in developing countries, but some esti- 2 mates indicate that the true number of people af- 3 fected may be double or even triple that number. 4 (12) The main health problems caused by STH 5 are related to their negative effect on childhood nu- 6 tritional status, which can cause stunting and wast- 7 ing. For example, STH infection may lead to ane- 8 mia, malabsorption of nutrients, loss of appetite, 9 nausea, abdominal pain, diarrhea, and reduced food 10 intake. When such health problems are experienced 11 in early childhood, a peak growth and development 12 period, the mental and physical damage—and loss of 13 future productivity and wage-earning potential—will 14 likely be irreversible. Schistosomiasis causes end- 15 organ damage to the urinary tract, female genital 16 tract, liver and intestines. It also results in chronic 17 health conditions in children. 18 (13) STH and schistosomiasis are also particu- 19 larly detrimental to the health of women of repro- 20 ductive age and pregnant women. Their underlying 21 poor iron status makes these women most suscep- 22 tible to developing anemia. Iron deficiency anemia 23 resulting from hookworm infection during pregnancy 24 has been linked to poor pregnancy outcomes such as 25 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 7 •HR 826 IH prematurity, low birth weight, and impaired lacta- 1 tion. Female genital schistosmiasis may be one of 2 the most common gynecologic conditions in Africa 3 leading to genital pain, itching, and bleeding and 4 markedly increased susceptibility to HIV/AIDS. 5 (14) Fortunately, there is a simple, cost-effec- 6 tive solution to STH and schistosomiasis infections: 7 single-dose deworming pills that can be safely ad- 8 ministered once or twice annually to those at risk. 9 Pharmaceutical companies have committed to donate 10 the drugs needed to treat all at-risk, school-age chil- 11 dren in developing countries. Regular administration 12 of deworming pills reduces morbidity associated with 13 STH and schistosomiasis infections by reducing 14 prevalence and transmission rates. 15 (15) Improved access to water, sanitation, and 16 hygiene (WASH) can also reduce the transmission of 17 NTDs, particularly intestinal worms. 18 (16) The benefits of deworming are immediate 19 and enduring. A rigorous randomized controlled trial 20 has shown school-based deworming treatment to re- 21 duce school absenteeism by 25 percent. School-based 22 deworming also benefits young siblings and other 23 children who live nearby but are too young to be 24 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 8 •HR 826 IH treated, leading to large cognitive improvements 1 equivalent to half a year of schooling. 2 SEC. 5. DEFINITION. 3 In this Act, the term ‘‘neglected tropical diseases’’ or 4 ‘‘NTDs’’— 5 (1) means infections caused by pathogens, in- 6 cluding viruses, bacteria, protozoa, and helminths 7 that disproportionately impact individuals living in 8 extreme poverty, especially in developing countries; 9 and 10 (2) includes— 11 (A) Buruli ulcer (Mycobacterium Ulcerans 12 infection); 13 (B) Chagas disease; 14 (C) dengue or severe dengue fever; 15 (D) dracunculiasis (Guinea worm disease); 16 (E) echinococcosis; 17 (F) foodborne trematodiases; 18 (G) human African trypanosomiasis (sleep- 19 ing sickness); 20 (H) leishmaniasis; 21 (I) leprosy; 22 (J) lymphatic filariasis (elephantiasis); 23 (K) onchocerciasis (river blindness); 24 (L) rabies; 25 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 9 •HR 826 IH (M) schistosomiasis; 1 (N) soil-transmitted helminthiases (STH) 2 (round worm, whip worm, and hook worm); 3 (O) taeniasis/cysticercosis; 4 (P) trachoma; and 5 (Q) yaws (endemic treponematoses). 6 SEC. 6. RULE OF CONSTRUCTION. 7 Nothing in this Act shall be construed to increase au- 8 thorizations of appropriations for the United States Agen- 9 cy for International Development or authorizations of ap- 10 propriations for the Department of Health and Human 11 Services. 12 TITLE I—FOREIGN AFFAIRS 13 SEC. 101. EXPANSION OF UNITED STATES AGENCY FOR 14 INTERNATIONAL DEVELOPMENT’S NE- 15 GLECTED TROPICAL DISEASES PROGRAM. 16 (a) FINDINGS.—Congress finds the following: 17 (1) Since fiscal year 2006, the United States 18 Government has been an essential leading partner in 19 advancing control and elimination efforts for seven 20 targeted neglected tropical diseases: lymphatic fila- 21 riasis (elephantiasis), onchocerciasis (river blind- 22 ness), schistosomiasis, soil-transmitted helminthiases 23 (STH) (round worm, whip worm, and hook worm), 24 and trachoma. Additional information suggests that 25 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 10 •HR 826 IH such efforts could also produce collateral benefits for 1 at least three other NTDs: foodborne trematodiases, 2 scabies, and yaws (endemic treponematoses). 3 (2) The United States Agency for International 4 Development’s (USAID) Neglected Tropical Dis- 5 eases Program has made important and substantial 6 contributions to the global fight to control and elimi- 7 nate the seven most common NTDs. Leveraging 8 more than $6.7 billion in donated medicines, USAID 9 has supported the distribution of more than one bil- 10 lion treatments in 25 countries across Africa, Asia, 11 and Latin America and the Caribbean. 12 (3) United States Government leadership has 13 been instrumental in maintaining the global fight 14 against NTDs and is a partner in the London Dec- 15 laration on Neglected Tropical Diseases (2012), 16 which represents a new, coordinated international 17 push to accelerate progress toward eliminating or 18 controlling 10 neglected tropical diseases by 2020. 19 (4) USAID’s Neglected Tropical Diseases Pro- 20 gram is a clear example of a successful public-pri- 21 vate partnership between the Government and the 22 private sector and should be judiciously expanded, as 23 practicable and appropriate. 24 VerDate Sep 11 2014 23:59 Feb 05, 2019 Jkt 089200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H826.IH H826 pamtmann on DSKBFK8HB2PROD with BILLS 11 •HR 826 IH (5) While many of the most common NTDs 1 have treatments that are safe, easy to use, and effec- 2 tive, treatment options for NTDs with the highest 3 death rates, including human African trypanosomia- 4 sis, visceral leishmaniasis, and Chagas disease, are 5 extremely limited. 6 (6) Since 2014, USAID’s Neglected Tropical 7 Diseases Program has been investing in gathering 8 research on treatment for certain NTDs to ensure 9 that promising new breakthrough medicines can be 10 rapidly evaluated, registered, and made available to 11 patients. 12 (b) SENSE OF CONGRESS.—It is the sense of Con- 13 gress that USAID’s Neglected Tropical Diseases Program 14 should— 15 (1) provide integrated drug treatment packages 16 to as many individuals suffering from NTDs or at 17 risk of acquiring NTDs as logistically feasible; 18 (2) better integrate control and treatment tools 19 and approaches for NTDs into complementary devel- 20 opment and global health programs by coordinating 21 across multiple sectors, including sectors relating to 22 HIV/AIDS, malaria, and other infectious diseases 23 and development sectors relating to education (in- 24 cluding primary and pre-primary education), food 25 V [Text truncated for display. 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