Category Archives: NTDs

The Unseen Impacts of NTDs


Khasirimi Mkala sits in her family’s compound. She is largely immobile due to her Elephantiasis

When we talk about the effects of neglected tropical diseases (NTDs), we have a tendency to focus on the physical and economic impacts alone, ignoring a major side effect of these conditions. In recognition of World Mental Health Day on October 10, we are taking a look at the unseen consequences of one of the most devastating NTDs.

Lymphatic filariasis (LF) is a disease transmitted by mosquitoes that leads to painful, debilitating swelling of the limbs or genitalia, inspiring the disease’s other name, elephantiasis. Though LF is easily prevented with medication, if left untreated, the severe swelling is irreversible. Individuals suffering from advanced LF are often unable to work and can suffer social stigma as a result of the disfiguring disease. Many are ostracized or even shunned by their communities.

The connection between LF and mental health has not received much attention in the scientific literature. A new paper released this summer by David H. Molyneux, Charles Mackenzie and Thanh G.N. Ton is the first to estimate the global psychological burden caused by the disease. Based on the few studies that exist on the topic, they estimate that 50 percent of clinical LF patients suffer from depression – roughly 18.1 million people. This is a conservative estimate, given that a study in India, which bears the largest burden of LF in the world, found that 97 percent of LF patients suffer from depressive illness.

When calculating the true burden of LF, Molyneux and his colleagues argue that the psychological effects on caregivers, which have not previously been quantified, need to be factored in as well. Based on a study of caregivers of blind individuals, which found that 48 percent had depression, they estimate 25 percent of caregivers of individuals with severe LF to be depressed, for an estimated total of 1.25 million people. That brings the total number of individuals suffering from depression as a result of LF to 19.35 million.

In 2013, the Global Network’s Emily Conron traveled to Lèogâne, Haiti, to interview patients with advanced LF. “These individuals told me over and over again that the hardest part of their condition was their isolation from family and friends and the shame they felt when they went out in public, where strangers would stare at their affected limb and make cruel comments,” Emily writes. In a country with one psychiatrist for every 200,000 people, access to traditional mental health care in Haiti is a near impossibility.

The feelings of social isolation have medical implications as well as psychological. A 2007 study conducted in Sri Lanka found that those suffering with severe LF avoided clinical treatment due to the embarrassment of being seen in public with the condition.

When it comes to tackling NTDs, treatment must address psychological challenges as well as physical symptoms. Though the World Health Organization began testing support programs for LF patients in 1998, such programs are still not widespread. Morbidity management – a basic package of services aimed at preventing disability in individuals already infected with advanced LF, ideally including measures to prevent disability from the mental health implications of LF – has not been scaled up to meet the needs of patients. Despite the fact that WHO’s Global Programme to Eliminate Lymphatic Filariasis, launched in 2000, includes LF morbidity management as a twin strategic goal of preventive chemotherapy to prevent new LF cases, only about one-third of national LF programs have established morbidity management measures.

Patients with advanced LF are, sadly, some of the most neglected patients of all those affected by neglected tropical diseases. Much more should be done to ensure that patients for whom the goal of eliminating LF transmission will be realized too late receive the healthcare they need for the physical and psychosocial effects of LF.

Celebrating NTD Success Stories: Good News from Haiti

Emily Conron speaks with patients in Haiti suffering from chronic filarial lymphedema.

Emily Conron speaks with patients suffering from lymphatic filariasis in Haiti

During the month of October, END7 student supporters are celebrating NTD Success Stories — spreading the exciting news that many countries around the world have already made incredible progress towards the control and elimination of some NTDs. In recent weeks, there have been many new successes to celebrate, like the announcement two weeks ago that Mexico has become the third country to officially eliminate river blindness, and the exciting news Monday that William Campbell and Satoshi Omura were awarded the Nobel Prize in medicine for their discovery of ivermectin, a drug used to treat and prevent onchocerciasis and lymphatic filariasis. This month, in addition to these exciting announcements, we want to highlight four countries — Haiti, India, Sierra Leone and the Philippines — that have achieved success fighting NTDs. Each country has overcome their own challenges, ranging from earthquakes to the Ebola epidemic, to make sure communities receive the medicine they need. We think these stories help communicate not just the scope of the suffering caused by NTDs, but the hope we have of ending these diseases for good.

The poorest country in the Western hemisphere, with the highest infant mortality and lowest life expectancy, Haiti is a country with many challenges. But the story of Haiti’s success against NTDs is a powerful reason for hope. Nearly the entire population is at risk of contracting lymphatic filariasis (LF), a mosquito-borne NTD. Caused by thread-like filarial worms that live in the lymphatic system, LF causes painful swelling of the extremities (a condition known as elephantiasis) and genitals (a condition known as hydrocele). The high prevalence of NTDs like LF persists, in large part, because of poor access to water and sanitation. About nine out of ten Haitians in rural areas do not have access to clean, safe water, and almost half lack access to adequate sanitation facilities. These circumstances were compounded in the wake of the 2010 earthquake that killed at least 200,000 people and destroyed much of the nation’s infrastructure. Despite these challenges, Haiti is making incredible progress against NTDs and expanding its national NTD control program with the goal of eliminating LF for good.

Under the leadership of the Haitian government, a range of partners have assisted with the annual distribution of drugs to help prevent the spread of four NTDs: LF, whipworm, hookworm and roundworm. A critical aspect of the success of these efforts has been the training of more than 30,000 local community leaders to organize, promote and carry out mass drug administration (MDA), distributing medicine to everyone in at-risk communities.

Until the 2010 earthquake, Haiti’s Neglected Tropical Disease Control Program conducted MDAs only in the areas of the country where LF was most prevalent. The crowded capital city of Port-au-Prince, with relatively low levels of LF infection, was thought to be too difficult a setting to carry out MDA. But after two million people were left homeless following the earthquake, internal migration threatened to redistribute the disease. The Haitian government then decided to focus on national MDA coverage, with the aim of completely eliminating the disease and preventing redistribution.

By late 2011, at least one round of MDA had been conducted in all endemic areas of Haiti except the capital, Port-au-Prince. From November 2011 to February 2012, an MDA was conducted for the first time in the crowded metropolitan area. More than 80% of the population has now been reached with NTD medications, a tremendous accomplishment in a country facing many health and development challenges. In May of 2014, the U.S. Agency for International Development (USAID), a major partner of the Haitian government’s NTD program, delivered its one billionth treatment worldwide at a ceremony in Saint-Louis-du-Sud, Haiti, a testament to the country’s commitment and progress in the fight against NTDs.

Haiti is also an example of an integrated approach to combating NTDs, having successfully integrated its LF and soil-transmitted helminth (STH) control programs, which previously operated in separate units at the Ministry of Health. To supplement expanded MDA efforts, the country is also scaling up efforts to address the needs of Haitians already incapacitated by LF and to fortify table salt with medicine to prevent LF, an approach that has helped countries like China eliminate the disease. These efforts are supported by dedicated partners including the Pan American Health Organization, the Inter-American Development Bank, the U.S. Centers for Disease Control (CDC), USAID, the University of Notre Dame Haiti Program, IMA World Health and CBM.

Haiti is one of just four countries in the Americas where LF remains endemic, accounting for 80% of people at risk of the disease in the region. If the country can succeed in their effort to eliminate LF by 2020, it would be a major milestone in global efforts to end the disease. As Dr. Patrick Lammie, an immunologist with the CDC, told NPR, “If a country like Haiti, with all of the challenges that they’ve faced over the last few years, is able to achieve full national coverage, I think that is an important example for other countries, which are struggling to scale up their programs as well.”

Certainly, a country that has not just maintained, but expanded efforts against NTDs in the face of political instability and crippling natural disasters is a powerful example to the rest of the world. Haiti’s success demonstrates the power of country ownership, government leadership, partnerships and integrated and holistic public health programs in the fight against NTDs.

END7 supporters are excited to celebrate Haiti’s unfolding success story, a narrative of perseverance in the face of challenges — and the first of four inspiring NTD Success Stories in a month that’s already offered many reasons to celebrate!

From Houston and Washington to the German Capital; the Fight to End NTDs Returns to Berlin

Global Network and Sabin Vaccine Institute representatives meet German parliamentarian, Mr. Martin Rabanus, a Member of the Committee on Education, Research, and Technology Assessment

Global Network and Sabin representatives meet German MP Martin Rabanus

In September, the Global Network for Neglected Tropical Diseases (Global Network) and the Sabin Vaccine Institute traveled to Berlin to meet with Members of Parliament, German NGO partners and the media to inspire action on the promises to combat neglected tropical diseases (NTDs), made during the G7 Summit held in Germany this summer.

The Global Network, which is committed to seeing the end of NTDs — a group of 17 diverse diseases with distinct characteristics that thrive mainly among the poorest and most marginalized populations — works with partners around the world toward achieving this mission. The momentum to combat these debilitating and disfiguring diseases continues to grow and, during the G7 Summit at Schloss Elmau in June, Germany elevated the profile of NTDs by making “neglected and poverty-related diseases” a key topic for discussion.

The city of Berlin has a unique historical connection to NTDs; it was in Berlin 10 years ago that scientists, the German government and implementing partners first came together and coined the term “NTDs,” an important milestone in defining a collective response against these diseases. Germany is also home to the Institute for Tropical Medicine at the University of Tübingen where two 19th century German scientists who were instrumental in discovering the causes of schistosomiasis and elephantiasis, Theodor Bilharz and Otto Henry Wucherer, often lectured. Representatives from the university are also members of the newly formed German Network against NTDs.

During this most recent visit to Berlin, the Global Network’s Dr. Neeraj Mistry and Ms. Michelle Brooks, accompanied by Sabin’s President, Dr. Peter Hotez, as well as Dr. Maria Elena Bottazzi, participated in one-on-one meetings with Members of the German Bundestag, discussing short- and long-term goals surrounding disease elimination. Globally, nearly 1.4 billion people, including more than 500 million children, are at risk from NTDs and require treatment. Medicines are generously donated by pharmaceutical industry partners, however, the value of the donated drugs is not enough to combat NTDs if the funding falls short to ensure their delivery to communities who need them most.

It is fitting that a decade after pivotal meetings in Berlin created the term “NTDs,” the focus is once again on Germany. The G7 Leaders’ Declaration, published at the culmination of the summit, offers hopeful news for communities across Africa, Southeast Asia and in Latin America and the Caribbean, most marginalized by NTDs by promising to “invest in the prevention and control of NTDs in order to achieve 2020 elimination goals.”

An immediate increase in financing for NTD treatment and prevention programs is essential to build on the progress achieved so far. Opportunities to eliminate elephantiasis, river blindness and trachoma are nearly within our grasp. Countries worldwide, including the G7 nations, can play an important leadership role by helping to close this annual funding gap of US $220 million. If we fail to act now, not only will we reverse many milestones achieved, but one in six people across the world will continue to suffer unnecessarily from NTDs, held hostage in a cycle of perpetual poverty and inequality. Moreover, failure to act now will undermine the efforts of the G7 to demonstrate their accountability and effectiveness as a group.

We certainly applaud the German government for her bold steps taken on behalf of NTDs this year, and we will be watching this week on October 8th and 9th as the G7 ministers for health and research meet once again in Berlin to discuss next steps.

Adiós! Goodbye, oncho! Mexico joins two other countries in ending onchocerciasis in LAC

Mission to verify the elimination of onchocerciasis in Ecuador. PAHO/WHO, 2014

Mission to verify the elimination of onchocerciasis in Ecuador. PAHO/WHO, 2014

I can’t wait to spread the news. The Latin American and the Caribbean (LAC) region is one step closer to seeing the end of onchocerciasis (also referred to as river blindness): Mexico has become the third country in the world to officially wipe out this disease!

The drive for progress is much of what motivated me during my time as the Director of the Pan American Health Organization, the WHO Regional Office for the Americas. I am excited to continue celebrating these milestones as Neglected Tropical Disease (NTD) Special Envoy, and a life-long advocate for public health.

Earlier this year, I wrote about 7 achievable victories in the fight against NTDs that I hope to see accomplished in 2015. Many of these wishes are coming true.

This week, I am filled with the joyful sense of pride in the accomplishment of Mexico and its partners as I check off Mexico’s certification of onchocerciasis elimination from my wish list. Mexico’s success builds off of Colombia and Ecuador’s certification in 2013 and 2014, respectively, and gives me even more confidence that we will soon see news of a LAC region completely free of onchocerciasis.

Onchocerciasis is a devastatingly debilitating parasitic disease that causes itchiness, rashes, and eye problems, eventually leading to permanent blindness. The parasite is transmitted to humans by the bite of a black fly, which breeds in fast moving rivers, increasing the risk of blindness in nearby communities. What’s more, the disease causes a terrible ripple effect by pulling kids out of school to care for their blind elders, reducing economic productivity, and causing families to move out of fertile river valleys, decreasing agricultural outputs in already impoverished areas.

This momentous occasion moves the LAC region one step closer to eliminating the disease entirely—Guatemala has already submitted a request to WHO to verify elimination, and I hope to soon see more results from the enormous, highly coordinated, south-south cooperative effort between Brazil and Venezuela to stop transmission in the Yanomami communities along their borders.

We should all celebrate this official announcement, and we must particularly congratulate Mexico and the many partners that have been working to control this problem for decades and moved toward accomplishing elimination with new tools and new partners for the last fifteen years. 

Eliminating this disease requires unwavering determination. The first step in the elimination process is at least two years of mass drug administration, in which entire communities who are at risk of onchocerciasis are administered Mectizan (ivermectin) every six months. Merck has made an unprecedented pledge to donate Mectizan to everyone in need, for as long as needed. President Jimmy Carter and the Carter´s Center program (OEPA – Onchocerciasis Elimination Program for the Americas) have been instrumental, joining PAHO/WHO as well as the communities and health workers in a successful dream team. You can see President Carter’s video message here, congratulating partners for their hard-earned accomplishments.

Once large-scale programs are complete, treatments are delivered to individuals on an as-needed basis. Communities are monitored for an additional twelve years to make sure that transmission of this disease has been interrupted. Finally, after treatment and monitoring, countries stop the treatment intervention and watch for three years to ensure that there is no resurgence in transmission, and then apply for WHO certification that elimination has been achieved.

I was thrilled to be able to celebrate the long-term dedication and resulting accomplishment of all partners contributing to this milestone at an event at PAHO Headquarters last week. Health Ministers from the countries that have eliminated or will soon eliminate river blindness, technical advisors, and global policy leaders were specially recognized for the recent successes and spur motivation to run the race through the last mile all around the world. I was particularly moved when Dr. Etienne, Director of PAHO/WHO, invited me to share the frontline when she received the award. The outstanding accomplishment of the countries in the Americas comes at an excellent time, now that NTDs are officially identified in the recently adopted Sustainable Development Goals. The LAC region has hit the ground running.

Dr. Mirta Roses Periago is the Director Emeritus of PAHO/WHO and a Special Envoy for the Global Network for Neglected Tropical Diseases