II 116th CONGRESS 1st Session S. 2675 IN THE SENATE OF THE UNITED STATES October 23, 2019 Mr. Booker introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To authorize the Secretary of Health and Human Services to carry out activities relating to neglected diseases of poverty.

1. Short title This Act may be cited as the Study, Treat, Observe, and Prevent Neglected Diseases of Poverty Act or the STOP Neglected Diseases of Poverty Act . 2. Findings Congress finds as follows: (1) Neglected diseases of poverty, many of which are also known as neglected tropical diseases , are a group of diseases that disproportionately affect vulnerable populations living in extreme poverty. (2) More than 1,000,000,000 people worldwide are affected by neglected diseases of poverty. (3) Neglected diseases of poverty can be transmitted— (A) through contaminated food, water, and soil; (B) through parasites, insects, blood transfusion, and organ transplant; and (C) in some cases, congenitally. (4) Neglected diseases of poverty have a high rate of morbidity and mortality and can lead to health complications such as heart disease, epilepsy, asthma, blindness, developmental delays, stillbirth, low birthweight, and gastrointestinal disorders. (5) Some neglected diseases of poverty can be asymptomatic at the outset, but debilitating or dangerous symptoms can emerge over time or under certain conditions, such as pregnancy. It is estimated that millions of people are living with these diseases and are not aware that they are infected. (6) For tens of thousands of individuals, diseases of poverty that are chronic and neglected can manifest into severe illness later in life. (7) Neglected diseases of poverty place a significant financial burden on affected individuals and communities due to the health care costs associated with these diseases and because these diseases limit individuals’ productivity and ability to be active contributors to their communities. This burden could largely be prevented through early screening and treatment, which are highly cost effective. (8) Since its inception in 2006, the Neglected Tropical Diseases Program at the United States Agency for International Development and its partners, including the Centers for Disease Control and Prevention, have delivered more than 1,600,000,000 treatments to more than 743,000,000 people. (9) Due to the support provided by the United States Agency for International Development and its partners, 140,000,000 people live in regions where they are no longer at risk of contracting lymphatic filariasis, and 65,000,000 people live in regions where they are no longer at risk of contracting trachoma. (10) Although the exact prevalence and burden of these diseases in the United States is unknown because of stigma and limited reporting, surveillance, and awareness, one study estimates that there are 12,000,000 individuals living with a neglected disease of poverty throughout the country. These diseases disproportionately affect racial and ethnic minorities living in poverty and in regions where water quality and sanitation are substandard. (11) The major neglected diseases of poverty in the United States that predominantly occur among those living in poverty are the following: Tox­o­car­i­asis, cysticercosis, Chagas disease, toxoplasmosis, trichomoniasis, and Dengue Fever. (12) There is a lack of diagnostic and treatment programs, including for early diagnosis and treatment, for neglected diseases of poverty. These programs would be highly cost effective and would significantly reduce the burden of morbidity and mortality of these diseases. (13) Funding for research, preventive strategies, and the development of treatments and diagnostic tests for neglected diseases of poverty in the United States is limited. 3. Sense of Congress It is the sense of Congress that there is a need to study the prevalence and incidence of neglected diseases of poverty in the United States, identify preventive methods to combat neglected diseases of poverty, conduct research that will lead to more treatments and diagnostic tests for neglected diseases of poverty, and supply health care providers, public health professionals, and affected individuals and communities with educational resources on neglected diseases of poverty. 4. Definition of neglected diseases of poverty In this Act, the term neglected diseases of poverty has the meaning given such term in section 399OO(e) of the Public Health Service Act, as added by section 5. 5. Programs relating to neglected diseases of poverty Title III of the Public Health Service Act ( 42 U.S.C. 241 et seq.) is amended by adding at the end the following: W Programs relating to neglected diseases of poverty in the United States 399OO. Interagency Task Force on Neglected Diseases of Poverty in the United States (a) Establishment Not later than 180 days after the date of enactment of the Study, Treat, Observe, and Prevent Neglected Diseases of Poverty Act , the Secretary shall establish an Interagency Task Force on Neglected Diseases of Poverty in the United States to provide advice and recommendations to the Secretary and Congress to prevent, treat, and diagnose neglected diseases of poverty in the United States. (b) Members The task force shall be comprised of representatives of— (1) the Department of Health and Human Services, including the Assistant Secretary for Health and representatives from the Centers for Disease Control and Prevention, the Food and Drug Administration, the Health Resources and Services Administration, the National Institutes of Health, and the Biomedical Advanced Research and Development Authority; (2) the Department of State; (3) the United States Agency for International Development; (4) the Department of Agriculture; (5) the Department of Housing and Urban Development; (6) the Environmental Protection Agency; and (7) any other Federal agency that has jurisdiction over, or is affected by, neglected diseases of poverty policies and projects, as determined by the Secretary. (c) Initial report (1) In general Not later than 180 days after the date of enactment of the Study, Treat, Observe, and Prevent Neglected Diseases of Poverty Act , the task force shall submit a report to the Secretary based on a review of relevant literature to identify gaps in efforts, and guide future efforts, to prevent, identify, and treat neglected diseases of poverty in the United States, particularly toxocariasis, cysticercosis, Chagas disease, toxoplasmosis, trichomoniasis, and Dengue Fever. The report shall include a summary of findings with respect to— (A) estimated prevalence of neglected diseases of poverty in the United States; (B) geographic distribution and major distribution routes of neglected diseases of poverty in the United States; (C) disparities with respect to the burden of neglected diseases of poverty in the United States; (D) risk factors for neglected diseases of poverty in the United States; (E) existing tools for surveillance, prevention, diagnosis, and treatment of neglected diseases of poverty in the United States; (F) barriers to access to information and tools for surveillance, prevention, diagnosis, and treatment of neglected diseases of poverty in the United States; (G) comorbidities associated with neglected diseases of poverty in the United States; (H) awareness among health care providers and public health professionals regarding neglected diseases of poverty in the United States; (I) public awareness of neglected diseases of poverty in the United States, particularly among high-risk groups; (J) the economic burden of neglected diseases of poverty in the United States; and (K) strategies and lessons learned from the United States Agency for International Development Neglected Tropical Diseases Program, particularly those that are most applicable to efforts to prevent, diagnose, and treat neglected diseases of poverty in the United States. (2) Consultation In developing the initial report under paragraph (1), the task force shall consult with appropriate external parties, including States, local communities, scientists, researchers, health care providers and public health professionals, and national and international nongovermental organizations. (d) Duties The task force shall— (1) review and evaluate the current actions and future plans of each applicable agency represented on the task force as described in subsection (b) to prevent, diagnose, and treat neglected diseases of poverty in the United States; (2) identify current and potential areas of partnership and coordination between Federal agencies and develop a unified implementation plan to prevent, diagnose, and treat neglected diseases of poverty in the United States; (3) make efforts to apply applicable strategies and lessons learned from the United States Agency for International Development Neglected Tropical Diseases Program when developing the implementation plan under paragraph (2); (4) establish specific goals within and across Federal agencies to prevent, diagnose, and treat neglected diseases of poverty in the United States, including metrics to assess progress towards reaching those goals; (5) coordinate plans to communicate research and relevant accomplishments across Federal agencies and with States and local communities relating to the prevention, diagnosis, and treatment of neglected diseases of poverty; (6) develop consensus guidelines for health care providers and public health professionals for the prevention, diagnosis, and treatment of toxocariasis, cysticercosis, Chagas disease, toxoplasmosis, trichomoniasis, Dengue Fever, and other neglected diseases of poverty; (7) biannually make recommendations to Congress on strategies for the development of affordable tools to prevent, diagnose, and treat neglected diseases of poverty, including drugs, diagnostics, and vaccines; and (8) in developing the guidelines and recommendations under paragraphs (6) and (7), consult with external parties, including States, local communities, scientists, researchers, health care providers and public health professionals, national and international nongovernmental organizations, and centers of excellence with expertise in neglected diseases of poverty, including the centers of excellence described in section 399OO–5. (e) Definition of neglected diseases of poverty In this part, the term neglected diseases of poverty — (1) means chronic and disabling diseases that are caused by parasites, bacteria, and other pathogens and that primarily impact people living in extreme poverty; and (2) includes the following: (A) Chagas disease. (B) Cysticercosis. (C) Toxocariasis. (D) Toxoplasmosis. (E) Trichomoniasis. (F) Dengue Fever. (G) Other neglected tropical diseases, including those defined by the World Health Organization, such as the following: (i) Buruli ulcer. (ii) Chikungunya. (iii) Dracunculiasis. (iv) Echinococcosis. (v) Foodborne trematodiases. (vi) Human African trypanosomiasis. (vii) Leishmaniases. (viii) Leprosy. (ix) Lymphatic filariasis. (x) Mycetoma. (xi) Onchocerciasis. (xii) Rabies. (xiii) Schistosomiasis. (xiv) Soil-transmitted helminthiases. (xv) Taeniasis and neuro­cys­ti­cer­co­sis. (xvi) Trachoma. (xvii) Yaws. 399OO–1. Surveillance regarding neglected diseases of poverty in the United States (a) In general The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall award grants to States to carry out activities relating to implementing a surveillance system to determine the prevalence, incidence, and distribution of neglected diseases of poverty, particularly those that most impact individuals in the United States, including toxocariasis, cysticercosis, Chagas disease, toxoplasmosis, trichomoniasis, and Dengue Fever. (b) Considerations In awarding grants under subsection (a), the Secretary shall use the findings in the initial report of the Interagency Task Force on Neglected Diseases of Poverty in the United States under section 399OO(c) to identify and prioritize geographic locations and communities that have the highest estimated prevalence of, or have populations at greatest risk of acquiring, neglected diseases of poverty, particularly those described in subsection (a). 399OO–2. Support for individuals at risk for neglected diseases of poverty (a) In general The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall award grants or cooperative agreements to Federally qualified health centers to implement and analyze the guidelines developed under section 399OO(d)(6). (b) Initial awards The Secretary shall— (1) using the findings in the initial report of the Interagency Task Force on Neglected Diseases of Poverty in the United States under section 399OO(c), identify the geographic locations in the United States that have the highest estimated prevalence of, or have populations at greatest risk of acquiring, neglected diseases of poverty, particularly those that most impact individuals in the United States, including toxocariasis, cysticercosis, Chagas disease, toxoplasmosis, trichomoniasis, and Dengue Fever; and (2) prioritize Federally qualified health centers located in such geographic locations in awarding initial grants or cooperative agreements under subsection (a). (c) Definition of federally qualified health center In this section, the term Federally qualified health center has the meaning given the term in section 1861(aa) of the Social Security Act. 399OO–3. Education of medical and public health personnel and the public regarding neglected diseases of poverty in the United States The Secretary shall consult with the Assistant Secretary for Health, the Director of the Centers for Disease Control and Prevention, and the Administrator of the Health Resources and Services Administration, professional organizations and societies, and such other public health officials as may be necessary, including the centers of excellence described in section 399OO–5, to— (1) develop and implement educational programs to increase the awareness of health care providers and public health professionals with respect to the risk factors, signs, and symptoms of neglected diseases of poverty and strategies to prevent, diagnose, and treat such diseases; and (2) develop and implement educational programs to increase the awareness of the public with respect to the risk factors, signs, and symptoms of neglected diseases of poverty and strategies to prevent such diseases. 399OO–4. Research and development of new drugs, vaccines, and diagnostics Consistent with the recommendations of the Interagency Task Force on Neglected Diseases of Poverty in the United States established under section 399OO, the Secretary shall, directly or through awards of grants or cooperative agreements to public or private entities, provide for the conduct of research, investigations, experiments, demonstrations, and studies, including late-stage and translational research, in the health sciences that are related to— (1) the development of affordable therapeutics, including vaccines, against neglected diseases of poverty; and (2) the development of affordable medical point-of-care diagnostics to detect neglected diseases of poverty. 399OO–5. Neglected Diseases of Poverty Centers of Excellence (a) Establishment The Secretary, acting jointly through the Director of the National Institutes of Health, may enter into cooperative agreements with, and make grants to, public or private nonprofit entities to pay all or part of the cost of planning, establishing, or strengthening, and providing basic operating support for, one or more centers of excellence for research into, training in, and development of diagnosis, prevention, control, and treatment methods for neglected diseases of poverty in the United States, including tools to support prevention. (b) Eligibility To be eligible to receive a cooperative agreement or grant under subsection (a), an entity shall have a demonstrated record of research on neglected diseases of poverty. (c) Coordination The Secretary shall ensure that activities under this section are coordinated with similar activities of the Federal Government relating to neglected diseases of poverty, including the task force established under section 399OO. (d) Use of funds A cooperative agreement or grant awarded under subsection (a) may be used for— (1) staffing, administrative, and other basic operating costs, including such patient care costs as are required for research; (2) clinical training, including training for allied health professionals, continuing education for health professionals and allied health professions personnel, and information programs for the public with respect to neglected diseases of poverty; (3) research and development programs, including the end-to-end research and development of new treatments, diagnostics, and vaccines; (4) epidemiological surveillance and transmission studies capabilities; and (5) health education programs to raise awareness and reduce stigma of neglected diseases of poverty among high-risk populations. (e) Period of Support; Additional Periods (1) In general A cooperative agreement or grant under this section may be provided for a period of not more than 5 years. (2) Extensions The period specified in paragraph (1) may be extended by the Secretary for additional periods of not more than 5 years if— (A) the operations of the center of excellence involved have been reviewed by an appropriate technical and scientific peer review group; and (B) such group has recommended to the Secretary that such period be extended. 399OO–6. Authorization of appropriations To carry out this part, there are authorized to be appropriated such sums as may be necessary for fiscal year 2021 and each fiscal year thereafter. .