A Note from Our CEO and Board Chair
DEAR END FUND PARTNERS & SUPPORTERS,
2022 marks the tenth year of the END Fund, and in this report we reflect on a remarkable decade of shared commitment and transformative impact. We stand in gratitude to the donors, governments, local partners, and health workers who have worked alongside us to ensure that people at risk of NTDs lead healthier, more prosperous lives. Together, we’ve provided over one billion treatments, performed 43,000+ surgeries to prevent blindness and disabilities, and trained nearly 3.5 million health workers.
We hold the passionate belief that neglected tropical diseases can be banished from the face of the earth with the right level of resources and commitment. Our organization was built with this finite goal in mind—to have an impact so great that the END Fund would work itself out of existence.
Our founding was catalyzed by the London Declaration in 2012, a historic agreement to accelerate the control, elimination, and eradication of ten NTDs by 2020. Building on this momentum, the END Fund was launched by Legatum. In our first year, we successfully raised $19 million to support NTD control in Rwanda and Burundi. Over the course of the decade, we’ve rallied the private sector, donors, and partners to raise $$ million to mobilize what has become the largest mass drug administration program in history, reaching 100 million people each year across 31 countries.
The work we do creates greater health and wealth for generations of people. As a result of eliminating river blindness, Niger stands to gain $2.3 billion in GDP. In Rwanda, we are close to achieving goals once thought impossible by breaking the harmful cycle of intestinal worms and schistosomiasis, which will create $0.12 billion in income gains as a result of better education outcomes for children.
The resilience of our model has proven it can withstand the most challenging setbacks. Our COVID-19 Response Fund enabled us to provide crucial health services during shutdowns, fund prevention campaigns, and support workforce retention. In 2021, we celebrated the return of our treatment and program indicators to pre-pandemic levels.
Our goal for the next decade is both audacious and achievable: reducing the global burden of NTDs by 500 million people by 2030, or one-third of the global goal. We will accomplish this by investing in a holistic approach to preventing NTDs through improvements to water and sanitation infrastructure, health education, and behavior change programs. We’re building capacity of governments and local partners to utilize new disease mapping techniques and technologies to hone in on areas still under threat, and verify where elimination has been achieved. Most importantly, we will continue to center local organizations and partnerships, ensuring that the strengths and needs of the communities we serve are uplifted.
We couldn’t have come this far without our community of supporters. Together, let’s step into the second decade of the END Fund with a renewed commitment to defeating NTDs!
Chief Executive Officer,
The END Fun
2021 Impact Highlights
Million people treated
Million treatments provided
Million treatments valued at
Thousand health workers trained
Thousand surgeries performed
“In the ten years since the END Fund was created, we’ve provided more than a billion treatments and helped prevent XX million people from experiencing the harmful social and economic effects of these diseases. We collaborate with country governments and local and international partners to achieve long-term goals for elimination, and fill gaps when programs face unexpected challenges. Cuts to the UK’s international aid budget in 2021 threatened to end funding for countries to deliver lifesaving drugs for visceral leishmaniasis. This could have resulted in 20-30,000 deaths each year. To help avert this crisis, the END Fund expanded its focus to include visceral leishmaniasis, and we’re now supporting prevention and treatment programs in East Africa through 2023. Our aspiration is to enable 500 million people to live their lives free from the burden of NTDs by 2030. The END Fund’s 2030 Strategic Framework illuminates the pathway we will take with our donors and partners to achieve this vision.”
– Carol Karutu, Vice President of Programs
A Decade in Focus: Elimination on the Horizon
BURUNDI is poised to defeat trachoma, with surveillance surveys in 2020-21 indicating that the country has reached the threshold of achieving elimination. The country is preparing its dossier for verification of elimination of trachoma from WHO, and will likely be certified as trachoma-free in 2022.
RWANDA has the ambitious goal of eliminating schistosomiasis as a public health problem ahead of the WHO’s 2030 target. The country successfully halved the prevalence of the disease between 2000 and 2017, and is determined to bring levels to below 0.5% by 2024.
NIGER announced that it has eliminated river blindness, and is submitting its verification dossier to WHO. This remarkable achievement prevented 600,000 people from going blind in West Africa and added $2.3 billion in economic benefits.
MAURITANIA conducted trachoma assessment surveys to prove that elimination of the disease had been achieved, finding a single district still in need of intervention and successfully lowering rates of transmission. Mauritania submitted its dossier for verification of elimination of trachoma to WHO in 2021.
In MALI and SENEGAL, stop treatment surveys found that transmission of river blindness is suspected to have been achieved in up to 95% of endemic areas.
The END in sight: Eliminating river blindness in NIger
“Every year when the rains came, Nassir Banga’s arms began to itch uncontrollably—a portent of the disease that would eventually take his sight. “Since becoming blind, my life has been nothing but suffering,” he said.
And yet, Nassir Banga is quite possibly one of the last people to lose sight from river blindness in Niger. Fifty years ago, nearly 70% of Nigeriens were infected with Onchocerca volvulus, the parasite that causes the disease. Today, the country stands poised to be verified by the WHO as the first in Africa to eliminate transmission.”
“ All I hope for is that the illness ceases to exist and that no one is affected by it again.”
A Winning Combination: Defeating Lymphatic Filariasis in Kenya
The debilitating effects of lymphatic filariasis (LF) were once common amongst people living on Kenya’s Lamu coast. Lymphedema, a painful and disabling swelling of the limbs caused by advanced LF, is the most visible effect of the disease. It is estimated that 4.3 million people are at risk of LF in Kenya.
Kenya began a mass drug administration (MDA) program against LF in 2000, but lacked funding to complete enough annual rounds to eliminate the disease. “We started with high hopes, but the funds lasted just two years,” said Dr. Dunstan Mukoko, former director of the NTD Unit of the Kenyan Ministry of Health (MoH). MDA was carried out only when funding was available, until it was halted altogether after a decade.
The END of Parasitic Worms: The History of the END Fund in Rwanda
Villagers living near Ruhondo Lake in Rwanda are proud of their prospering community. People make their living by growing maize and rice, fishing, and running small businesses. “Living conditions are improving, the economy is growing every day,” said Felicien, a resident of the area.
However, the lake, rice paddies, and maize fields are sources of schistosomiasis and intestinal worms. That’s why residents eagerly accept treatment provided by community health workers, and view these drugs as essential to their wellbeing. “Taking the drugs is a relief for us. We always take them when they are available so that we are strong and able to work hard,” said Pascasie, a local farmer.
Economic modeling from the Economist Intelligence Unit found that productivity gains of $365 million* between 2021-2040 could result from achieving the WHO’s 2030 targets for eliminating intestinal worms and schistosomiasis as a public health problem.
Trusted Partnerships Deliver: Critical Treatment in the Democratic Republic of Congo
The Democratic Republic of Congo (DRC) is in the top three countries in Africa with the highest burden of NTDs. With more than 50 million people in need of treatment spread over a million square miles, the most effective and efficient strategy is integrated, community-based mass drug administration (MDA). Medicines are distributed by community health workers, who serve as a vital and trusted link between their neighbors and the health system.
The scaling up of DRC’s MDA program is the result of strong partnerships and close coordination at the local and national levels. Since our first investments in four provinces in 2014, the END Fund now supports integrated treatment in 16 provinces. In 2021, our implementing partners CBM and the United Front Against River Blindness (UFAR) provided 168,674 community health workers (CHWs) with training to distribute drugs, ultimately reaching over 27 million people with MDA for lymphatic filariasis, river blindness, schistosomiasis, trachoma, and intestinal worms. We have also piloted a mobile data collection model with UFAR to improve the speed of MDA data reporting and verification.
Tina Mboyo is a mother, merchant, and volunteer community health worker. “Sometimes when I pass people’s houses, they call out—we haven’t had the drugs yet! This shows that the drugs bring real relief to the communities.”
Aida Cover Feature: A Partnership To Rewrite The END To NTDs
Storytelling has long been used as one of the most powerful communication tools to educate, unify and spur action. In the coming decade, the END Fund is embarking on new storytelling partnerships that will allow us to increase awareness of NTDs and the impact they have on millions of people across the African continent.
Our partnerships within this context are deliberate: over the past five years we have redoubled our efforts to amplify storytellers that are representative of the communities we work with and that uphold our commitment to fundamental human dignity. By choosing more thoughtful and inclusive partnerships and language, we are able to highlight the impact of our programs with fuller and more authentic perspectives.
To celebrate 10 years of impact, the END Fund commissioned artist and activist Aïda Muluneh to create a body of work with photographers from six countries where we operate. Aïda is an Ethiopian photographer, contemporary artist, and activist who has captured the international art world through visual storytelling that intersects with, and elevates advocacy. In breathtakingly bold colors, she dissects social issues and challenges western representations of Africa.
In her latest collection, entitled ‘The Crimson Echo,’ Muluneh embeds multiple layers of narrative into each image to create a powerful interpretation of the impact of NTDs on gender equity, mental health, mobility, and access to resources. She uses motifs of both insects (The barriers within) and abstracted body parts (I sail on the memories of my dreams) which lend specific attention to the disease vectors and physical manifestations of NTDs, which are so often overlooked. Yet Muluneh approaches the topic of these diseases and the bodies they inhabit with dignity and grace. Using bright colors and respect for tradition as her vehicle, Muluneh’s work is dismantling renderings of a bleak and impoverished Africa.
In striking, intimate portraits of her female subjects, Muluneh uses elements of traditional Ethiopian body ornamentation and tattoos to honor traditional knowledge systems, beliefs and resilience of communities across Africa. Her subjects, extravagantly beautiful, appear composed, but silent, commanding the audience to better educate themselves, to ask questions: whom do these diseases affect? Why? Her message is blunt and didactic. By provoking the audience in this way, Muluneh protects her subjects from the burden of educating, while still successfully conveying the urgent need for education, attention, and action on neglected tropical diseases from her audiences.
As the END Fund continues to seek partnerships that elevate the voices of the communities in which we operate, this collaboration serves as a testament to the impact of inclusive storytelling and speaks to the urgency with which we must collectively act to address the burden of these neglected diseases and the impact they have on communities.
Since 2016, the END Fund has shifted from an entirely U.S.-based creative team, to working with 12 storytellers and creative teams across Africa in 2021. We are committed to advocating for stories characterized by deep respect, full transparency and social responsibility because of their capacity to bridge divides and empower communities. On our path to re-writing the END to NTDs, we must continue to hand the pen to those most closely affected by – and therefore best positioned to speak about – the burden of NTDs.
Partners United with a Vision for an NTD-free Nigeria
The END Fund has an audacious but achievable goal—ending NTDs in Nigeria, where more than 166 million people require treatment. All five NTDs that can be treated with mass drug administration (MDA) are present in the country: river blindness, lymphatic filariasis, schistosomiasis, trachoma, and intestinal worms.
National and international non-governmental organizations, the private sector, popular national figures, and the international community all have a vital role to play in ending NTDs in Nigeria.
“We don’t have to see any more generations of blind people. We don’t have to see any more generations where people are disfigured by river blindness and elephantiasis. And how can we do that? By lifting the dignity of everybody.”– Franca Olamiju, executive director of MITOSATH
NTDs in Focus: Treating NTDs Helps Children Learn
Deworming increases the likelihood of girls to attend secondary school by 25%.
Intestinal worms are common in children, and steal the nutrients and energy kids need to grow and learn. Studies show that NTD treatment is the single most cost-effective means of improving children’s school attendance. Treating entire communities for NTDs also benefits children’s education. When adults in the family are sick, children may take on the responsibility of chores and earning income. Children are less likely to miss school if their family members are healthy.
The END Fund has provided ## treatments for intestinal worms and schistosomiasis, and helped ## countries to launch school-based deworming programs. Rwanda has made enormous progress in lowering rates of these diseases since our partnership began in 2012, and today the country envisions a worm-free future for most of its population by 2024.
Gerardine is a 15-year-old girl who attends secondary school in Musanze, Rwanda. She received treatment for intestinal worms as part of the national deworming program supported by the END Fund. “I remember before we got this type of medication we used to fall asleep in class,” she said.
INVESTING IN WOMEN AND GIRLS BY DEFEATING NTDS
Susan is a Maasai woman who makes and sells traditional beadwork. She was at risk of going blind from trachoma, which would have devastated her ability to earn a living. A 15-minute operation saved her vision, and her livelihood. “After the operation, I was able to see well. So now I’m able to do my beadwork day and night, as long as I have a source of light.”
Anyone can be infected by NTDs, but women and girls are especially vulnerable. Trachoma is more common amongst women because they usually care for young children who are infected. Women and girls are also more likely to miss school and work to care for sick family members. Societal gender roles such as washing clothes and fetching water put them at greater risk. Physically, symptoms like malnutrition and anemia are especially harmful to women during pregnancy, and susceptibility to sexually transmitted infections is increased by NTDs like urogenital schistosomiasis.
Over the past 10 years, the END Fund provided ## treatments for trachoma and ## treatments for river blindness. We’ve funded surgeries for ## people that prevented them from going blind from advanced trachoma. Several countries are close to defeating these diseases entirely. The END Fund financed surveys and provided technical assistance to verify elimination of trachoma in Mauritania and Burundi, and river blindness in Niger.
THE BURDEN OF NTDS ON WOMEN AND GIRLS
Amount women and girls with FGS are more likely to become infected with HIV.
Proportion of the economic burden of blindness from trachoma that falls on women.
Number of women and girls who suffer from female genital schistosomiasis (FGS).
Amount women and girls are more likely to develop trichiasis, risking blindness.
NTDs in Focus: Fighting Stigma and Isolation
The psychological and social harms of NTDs can be devastating. Discrimination and stigma against people with visible disabilities can lead to job loss, reduced income opportunities, and fewer marriage prospects. People with disabilities caused by NTDs are at increased risk of mental health disorders like anxiety and depression.
People with elephantiasis can reduce the swelling in their limbs by washing and elevating them daily. Programs that educate people with this condition and their family members can provide physical and emotional comfort to those who need it most.
From 2012-2021, The END Fund provided ## treatments for LF, and sponsored ## surgeries and disability management services to people with elephantiasis. We’ve funded innovative approaches to treating LF that are helping countries like Kenya to accelerate progress towards eliminating the disease.
ENDING NTDS BOOSTS ECONOMIES
It’s estimated that 57 million disability-adjusted life years are lost every year to NTDs—this number is likely much higher. Treating and preventing NTDs can boost economic productivity, keeping adults healthy and able to make a living. Children can achieve greater earnings potential when they reach adulthood as a result of more years of schooling.
Through our Deworming Innovation Fund, we’ve provided ## treatments for schistosomiasis in Kenya, Rwanda, Ethiopia, and Zimbabwe. Rwanda is close to eliminating schistosomiasis entirely, and the Deworming Innovation Fund provided support to map areas of the country to detect where the disease still lingers.
Boniface Opinya makes his living by fishing Lake Victoria in Kenya, whose waters harbor the parasite that causes the deadly disease schistosomiasis. “We know that we get diseases there. I lost three of my friends from schistosomiasis. But I don’t have a job if I stop going to the lake,” he said. He’s seen the positive effects of schistosomiasis treatment in his village. “That medicine helped so many people here.”
According to the WHO, 1 in 2 people with leprosy or lymphatic filariasis will experience depression.
Oumar’s legs and feet have been extremely swollen since he was a young boy, a condition called elephantiasis that is caused by lymphatic filariasis. Because of his appearance, his family sends him to beg for money instead of to school with his siblings. The children in his village tease him, calling him “Big Foot” and “Boy Who Can’t Run.” When asked what he would do first if he had healthy legs and feet, he said, “I would run straight to school like the other kids!”
Economic modeling of four countries found $5.1 billion in productivity gains in countries supported by the Deworming Innovation Fund from 2021-2040 if WHO targets for schistosomiasis and intestinal worms are met.
Angola’s School Deworming Program Helps Children Grow, Learn, and Thrive
Arminda Maravilha is a happy, healthy sixth-grader living in Angola. “My life here is good. My favorite things to do are go for walks and to study.” But as a young child, she suffered from intestinal worms and schistosomiasis. “I had a very big belly and I was sick all the time.”
In Angola, ## million children need treatment for these diseases each year.
Intestinal worms and schistosomiasis harm physical and intellectual growth in children. The effects of these infections make it difficult for kids to attend school and concentrate on learning.
Fortunately, Arminda received treatment for these infections at her school each year, which helped her grow into an active, healthy child with energy to focus on her studies.
Children who are worm-free can attend school more regularly, boosting their educational achievement and potentially earning more money over their lifetimes.
In 2013, the END Fund and our implementing partner, the MENTOR Initiative, supported the Angolan Ministry of Health to launch its first-ever integrated neglected tropical disease program. As of 2021, the END Fund and MENTOR support seven provincial health departments to conduct regular school-based mass drug administration (MDA). In the past decade, ## children received treatment for intestinal worms and schistosomiasis.
Cristiano Rocha Andrade supervises this work in the municipality of Quibala in Cuanza Sul, Angola. “We can already see a change in the development of children in schools who have been taking the medication,” he said.
Angola has also modeled the integration of prevention strategies into school MDA programs. At over 700 schools, children and teachers learned about washing hands with soap to help break the cycle of transmission, and how to build simple handwashing stations. Since water access can be a challenge in some areas, MENTOR and partners drilled boreholes for schools to provide reliable sources of clean water for handwashing.
We believe in the fundamental dignity of all human beings, and so we:
Uphold a vision of human flourishing at the center of our work and interactions.
Embrace and respect differences, foster an inclusive culture, and instill fair, ethical, and equitable practices.
Center the experiences of people and communities affected by neglected tropical diseases in all that we do.
We have a singular, passionate focus to end NTDs, which place a significant and preventable burden on the human condition, and so we:
Optimize our time and resources to maximize progress toward achieving specific disease control and elimination goals.
Leverage our unique assets to be of best and highest service to the collective movement to end NTDs, ensuring we complement and do not duplicate the work of others.
Strive to ensure that no one at risk of NTDs is left behind.
We believe that honoring joyful and effective relationships is central to achieving our mission, and so we:
Treat everyone with respect, kindness, and a spirit of generosity and gratitude.
Invest the time and attention needed to build, earn, and maintain trusted, long-term, and collaborative relationships with partners, communities, investors, and colleagues.
Respect everyone’s unique life journey and perspectives.
Recognize relationships are complex, nuanced, and evolving and require commitment, humility, and compassion.
We take seriously the privilege and responsibility of stewarding our investors’ resources and serving communities at risk of NTDs, and so we:
Employ a highly efficient, effective, and results-oriented approach to mobilizing and allocating capital.
Invest in data-driven, country-led, and sustainable programs.
Ensure excellence, elegance, and accuracy in all communications and interactions with investors and partners.
Commit to being a reflective, learning organization, proactively sharing progress, lessons learned, and challenge.
We are committed to embracing innovation and maintaining an entrepreneurial spirit in all that we do, and so we:
Stay flexible, nimble, creative, and action-oriented in our approach.
Challenge the status quo and take smart risks.
Foster, identify, and fast-track innovations that can increase our impact.
Cultivate curiosity, humility, courage, and a growth mindset.