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Ellen Agler - 15 Jan

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Neglected tropical diseases (NTDs) affect over one billion of the worlds poorest people. More than 170,000 people die from NTDs each year, and many more suffer from blindness, disability, disfigurement, cognitive impairment, and stunted growth. Yet NTDs are treatable and preventable, and the annual cost of treatment is incredibly low.In Under the Big Tree, public health leader Ellen Agler and award-winning writer Mojie Crigler tell the moving stories of those struggling with these diseases and the life-saving work that can beand has beendone to combat NTDs. They introduce readers to people from all walks of lifefrom car washers in Lake Victoria and surgeons on motorbikes to under-resourced local nongovernmental organizations (NGOs) and Big Pharma scientistsas they chronicle what has been called the largest public health program in the world.On the one hand, the solutions are simple: deliver medication to people who need it and leverage local systems to offer prevention, treatment, and education. On the other hand, solutions are complex: navigating local and national politics, delivering treatment to some of the most remote, vulnerable communities, and coordinating global and local donors, international NGOs, thousands of health workers, and millions of citizens.Drawing on interviews with major players in the NTD world who share their cutting-edge research and frontline experiences, Under the Big Tree is a moving introduction to the science, the tactics, and the partnerships working to address these terrible diseases that affect the most vulnerable people in the world. With a foreword by Bill Gates, this book fascinates, inspires, and gives readers concrete steps for further engagement.

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UNDER THE BIG TREE

UNDER THE BIG TREE

Extraordinary Stories from the Movement to End Neglected Tropical Diseases

Ellen Agler with Mojie Crigler

FOREWORD BY BILL GATES

2019 Ellen Agler All rights reserved Published 2019 Printed in the United - photo 1

2019 Ellen Agler

All rights reserved. Published 2019

Printed in the United States of America on acid-free paper

9 8 7 6 5 4 3 2 1

Johns Hopkins University Press

2715 North Charles Street

Baltimore, Maryland 21218-4363

www.press.jhu.edu

Library of Congress Cataloging-in-Publication Data

Names: Agler, Ellen, 1972 author. | Crigler, Mojie, 1972 author.

Title: Under the big tree : extraordinary stories from the movement to end neglected tropical diseases / Ellen Agler with Mojie Crigler ; foreword by Bill Gates

Description: Baltimore : Johns Hopkins University Press, 2019. | Includes bibliographical references and index.

Identifiers: LCCN 2018020737 | ISBN 9781421427232 (hardcover : alk. paper) | ISBN 1421427230 (hardcover : alk. paper) | ISBN 9781421427249 (electronic) | ISBN 1421427249 (electronic)

Subjects: | MESH: Neglected Diseasesprevention & control | Tropical Medicine | International Cooperation | Disease Eradication | Africa

Classification: LCC RC961 | NLM WC 680 | DDC 362.1969/883dc23 LC record available at https://lccn.loc.gov/2018020737

A catalog record for this book is available from the British Library.

One hundred percent of author proceeds from this book will be donated to programs combating neglected tropical diseases.

Special discounts are available for bulk purchases of this book. For more information, please contact Special Sales at 410-516-6936 or .

Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least 30 percent post-consumer waste, whenever possible.

FOREWORD

Imagine a mosquito biting you. Its infected with tiny larvae, which enter your body and set up camp in one of your lymph nodes. They mate and nest, causing your leg to eventually swell to ten times its usual size.

Left untreated, this painful and disfiguring disease, known as lymphatic filariasis (LF), can lead to permanent disability and social stigma. And it is only one of twenty neglected tropical diseases (NTDs) that afflict more than a billion people, mainly in the developing world.

Spread by worms, insects, and bacteria, NTDs cause immense human suffering. In the worst cases, they kill. And all of them can be preventedif the world continues to work together to end them.

I recently had the opportunity to join a group of health workers in a rural village in Tanzania who were going door to door to distribute medicines to help eliminate LF. Their passion and tireless efforts were inspiring because theyre helping break the cycle of transmission to finally end this terrible disease.

In 2012, 1.5 billion people needed preventive drug treatment to protect them from LF. Since then, thanks to the work of health workers like those I met in Tanzania, LF has been eliminated in eleven countries and reduced in many others.

My wife, Melinda, and I have been proud to be part of the global effort to beat NTDs. In 2012, our foundation joined a coalition of pharmaceutical companies, governments, health organizations, and charities that made a commitment to controlling and eliminating ten NTDs.

The progress has been amazing. In 2016 alone, more than 1 billion people were reached with NTD treatments.

Still, theres a lot of work to be done. We need additional support from the public and from philanthropic sectors in order to reach more people who need treatment. We need better drugs and diagnostics to treat people more quickly and effectively. And we need to continue supporting frontline health workers so they can help more people, especially in hard-to-reach areas.

Under the Big Tree shines a spotlight on some of the heroes in the ambitious effort to rid the world of NTDs. Their stories are an inspiration and, I hope, a rallying cry for others to join the global efforts to finally end the suffering caused by these ancient diseases.

Im optimistic that together we can lift the burden of these preventable diseases and improve the lives of millions of people around the world.

Bill Gates

ABBREVIATIONS

APF: African Philanthropy Forum

APOC: African Programme for Onchocerciasis Control

CDC: Centers for Disease Control and Prevention

CDD: community drug distributor or community-directed distributor

CDTI: community-directed treatment with ivermectin

DALYs: disability-adjusted life years

DEC: diethylcarbamazine

DFID: Department for International Development (United Kingdom)

DRC: Democratic Republic of the Congo

ESPEN: Expanded Special Project for Elimination of NTDs

GTMP: Global Trachoma Mapping Project

HKI: Helen Keller International

IOCC: International Orthodox Christian Charities

ITI: International Trachoma Initiative

KEMRI: Kenya Medical Research Institute

LF: lymphatic filariasis

MDA: mass drug administration

MDG: Millennium Development Goal

MDP: Mectizan Donation Program

MoHCC: Ministry of Health and Child Care (Zimbabwe)

MSD: Merck Sharp & Dohme

NatPharm: National Pharmacy (Zimbabwe)

NGDO: nongovernmental development organization

NGO: nongovernmental organization

NTD: neglected tropical disease

OCP: Onchocerciasis Control Program

PCD: Partnership for Child Development

RSC: Rockefeller Sanitary Commission

SAFE: surgery, antibiotics, facial cleanliness, and environmental improvement

SCI: Schistosomiasis Control Initiative

STH: soil-transmitted helminth

TT: trachomatous trichiasis

UN: United Nations

USAID: United States Agency for International Development

WHO: World Health Organization

UNDER THE BIG TREE

Nearly two dozen diseases have been designated neglected tropical diseases. The most prevalent are river blindness, trachoma, lymphatic filariasis, schistosomiasis, and intestinal worms (roundworm, whipworm, and hookworm). These five NTDs are the focus of this book.

NTDs exist in at least 149 countries. This book concentrates mainly on countries in Africa, which shoulders the heaviest burden.

In todays big, bold effort to end NTDs can be found many heroes and many inspiring stories.

Here are a few of them.

CHAPTER ONE
Crisis and Collaboration

On the second day of a conference in 2012, Dr. Massitan Dembl took the lectern. Her fellow presenters in the main ballroom of La Palm Royal Beach Hotel in Accra, Ghana, were several dozen neglected tropical disease (NTD) program managers from countries throughout Africa. These men and women directed their governments efforts to treat, prevent, and, in many cases, eliminate a group of parasitic and bacterial afflictions that, although they affect more than 1.5 billion people worldwide, have historically been greatly ignored.

Turned-in eyelashes that scratch the cornea, relentless itching due to millions of worms in the skin, blindness, bloody urine, enlarged scrotums, elephantine legs and feet, not to mention anemia, malnutrition, stunted growth, stunted cognitive development, and increased risk for complications from diseases such as HIV/AIDSthese are but a few sequelae of various NTDs, whose sufferers often drop out of school and live on the margins of society, sometimes stigmatized and abandoned by their families. NTDs are both a source and a result of poverty. The 1.5 billion people who suffer from them are among the poorest in the world.

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