A Note from Our CEO and Board Chair
DEAR END FUND PARTNERS & SUPPORTERS,
It is often said that it is easy to overestimate what can be achieved in a year, and underestimate what can be achieved in a decade. This feels particularly appropriate as we celebrate the END Fund’s ten-year anniversary and the magnitude of what we have accomplished with you, our partners and supporters. We are humbled by your passion, resourcefulness, and commitment and we are grateful to every donor, government representative, implementing partner, health worker, and NTD champion who has helped provide over one billion NTD treatments, perform over 68,000 surgeries to prevent blindness and disabilities, and train nearly 3.7 million health workers since our founding in 2012.
From inception, we believed that NTDs could be ended in our lifetime. NTDs have needlessly held back human progress for millennia and the END Fund was founded on the principle that private philanthropy could help change this.
Our founding coincided with the London Declaration on NTDs in 2012. One of the most significant public-private partnerships in global health history, this enduring commitment has seen over 14 billion NTD treatments generously donated by our pharmaceutical partners. Over the last decade, this has inspired the END Fund to mobilize $334 million to deliver these treatments and support the increasingly progressive goals of our government partners across 33 countries.
While this work continues at a global scale, we remain driven by the impact of NTD treatments on the life of one child, one family, one community. Through the incredible work of our partners, girls stay in school longer, agricultural yields are greater, parents have more opportunity to support their families, and children have more opportunity to play.
To continue our impact into the next decade, we recognize the need to stay adaptive enough to change. The world has evolved significantly since 2012, and some of the challenges we have faced in recent years — the COVID-19 pandemic and a critical focus on racial justice and diversity, equity, and inclusion in particular — have forced us more than ever to challenge ourselves and the structures upon which our success has been built. We are proud of our ongoing responses to these seismic events. Our COVID-19 Response Fund has enabled our partners to provide critical health services and support health workforce retention during shutdowns. We increasingly prioritize working with local partners on both NTD programs and storytelling and with governments directly as grantees. Yet, as we look back over ten years, what we are most proud of is the trust that you, our partners and supporters, continue to invest in us.
Looking forward, we continue to be inspired by our vision that all people at risk of NTDs can live healthy and prosperous lives. To realize this, we will scale up treatment in many countries while supporting others to scale down and diversify their activities as they near elimination. We will introduce new technologies and capture new data to speed up and make the process of disease elimination more accurate. We will continue to go where others do not, ensuring no community is left without the treatment it needs. Most importantly, we will do all this while maintaining our passionate focus on what a life without NTDs can mean for one child, one family, one community.
Only by centering the voices and needs of communities affected by NTDs, and only with the trust and collaboration of you, our partners and supporters, can we eliminate these ancient diseases once and for all.
With immense gratitude and optimism for the next decade,
Our Decade in Impact (2012-2021)
treatments valued at (USD)
health workers trained
“In the ten years since the END Fund was created, we’ve provided more than a billion treatments worth more than $1.5 billion. Our commitment for the next 10 years is to support efforts that accelerate NTD programs to achieve and surpass the 2030 elimination goals as stipulated in the World Health Organization’s Road map for neglected tropical diseases 2021–2030. We challenge leaders from African governments, the public and private sectors, and civil society to become effective NTD champions and advocates by using their influence to facilitate an increase in domestic financing at regional, national, and local levels. In addition, we call on Africans living in the diaspora to play their part by directly investing in NTD programming within their countries of origin. The ultimate objective is to progressively achieve increased local action and resource mobilization towards NTD control and elimination, leading to a fully African-driven NTD programming and elimination agenda.”
– 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.”
The economic effects of river blindness were devastating to the nation. The disease impacted people’s ability to work and caused hardship for their communities—especially children and caretakers, who lost opportunities to go to school and earn money. River blindness took away not only Banga’s sight, but with it, his ability to make a living and be independent. “Before I had a field that I cultivated, but now I can’t plant anything,” he said. “Everything I used to do for myself, I can no longer do.”
“ 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 in Rwanda 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.”
A Partnership to Re-frame 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
Angola’s School Deworming Program Helps
Children Grow, Learn, and Thrive
Arminda Maravilha is a happy and 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.”
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.
Generous contributions from donors led by The Leona M. and Harry B. Helmsley Charitable Trust enabled the END Fund and our implementing partner, the MENTOR Initiative, to support the Angolan Ministry of Health to launch its first-ever integrated NTD program.
These grants helped Angola to scale up school-based mass drug administration (MDA) to seven provincial health departments from 2013-2021.
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.
With support from the Helmsley Charitable Trust, Angola modeled the integration of NTD 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.
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 funded surgeries for over 49,000 people that prevented them from going blind from advanced trachoma. Several countries are close to defeating this disease entirely. The END Fund financed surveys and provided technical assistance to verify elimination of trachoma in Mauritania and Burundi.
THE BURDEN OF NTDS ON WOMEN AND GIRLS
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 with FGS are more likely to become infected with HIV.
Amount women and girls are more likely to develop trichiasis, risking blindness.
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 social isolation. 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 over 260 million treatments for lymphatic filariasis (LF), and sponsored over 17,000 surgeries and disability management services to people with elephantiasis. We have funded innovative approaches to treating LF that are helping countries like Kenya to accelerate progress towards eliminating the disease.
Photo: Kudia Kubanza Urbain is 23 years old and lives in the village of Mbanza Mfumu Nkento in the DRC. Kudia’s legs and feet are extremely swollen since he was a young boy. He lives with a condition called elephantiasis that is caused by LF.
According to the WHO, 1 in 2 people with leprosy or lymphatic filariasis will experience depression.
Ending NTDs Boosts Economies
It’s estimated that 57 million disability-adjusted life years are lost every year to NTDs—and 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 (DIF), we have provided over 34 million treatments for schistosomiasis in Kenya, Rwanda, Ethiopia, and Zimbabwe. Rwanda is close to eliminating schistosomiasis entirely, and DIF provided support to map areas of the country to detect where the disease still lingers.
Boniface Opinya makes his living by fishing in a lake that harbors 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.”
$ 5.1 BILLION
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.
Founded on the principle that no one should be left behind, the END Fund joined a community of visionaries who dared to be the generation to end NTDs once and for all. In just a decade, we helped build a coalition of over 45 local and international implementing partners and over 6,200 investors to help distribute more than a billion NTD treatments. In 2021 alone, we received more than 2,200 donations from around the world including Australia, Brazil, Finland, Kenya, New Zealand, Sweden, Taiwan, Uganda, United Arab Emirates, and Zimbabwe. This global community shows the increased enthusiasm around the mission of END Fund, the work of our partners, and the belief that we can end NTDs in our lifetime. We are deeply grateful for the trust, camaraderie, and impact that has been achieved as a result of these unprecedented partnerships.
For a full list of our investors and partners over the life of the END Fund, visit end.org/partners.
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.
The END Fund would like to thank the photographers and organizations whose images are reproduced in our 10 year anniversary impact report: Aïda Muluneh, Bmworkz, Gabriel Dusabe, James Drinkwater, Joseph Moura, Justin Makangara, Mo Scarpelli, Nichole Sobecki, and Viviane Rakotoarivonyi.