United Voices

This is the story of a remarkable philanthropic funding partnership, which is treating those at risk from Neglected Tropical Diseases that  afflict the poorest billion people in the world.

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United Voices

This is the story of a remarkable philanthropic funding partnership, which is treating those at risk from Neglected Tropical Diseases that  afflict the poorest billion people in the world.

United Voices: The story of the END Fund

On the rare occasion that an idea changes the course of history, it can offer a moment to pause and look back to its genesis; following the story upstream, from the rolling river of its success to the headwaters of its source. This is the story of a remarkable philanthropic funding partnership, which, through a combination of inspiration, vision, expertise and action, plus an $8 million funding injection, championed a revolutionary method for treating those at risk from a pernicious group of diseases. Known as Neglected Tropical Diseases (NTDs), they afflict, through chronic disability and morbidity, the poorest billion people in the world. It began with a cappuccino, and a spur-of-the-moment phone call …

The 2006 Financial Times article by Andrew Jack

The Call

In 2006, when Professor Alan Fenwick, a leading parasitologist, gave an interview to health journalist Andrew Jack of the Financial Times, about funding for his programmes on neglected diseases in the world’s poorest countries, he did not expect to pick up the telephone the following morning to Alan McCormick, a Partner at global investment firm Legatum. McCormick had been drinking coffee and scanning the newspaper, as part of the usual daily digest for investments, when a phrase from an interesting article on philanthropy implanted itself in his mind: that such treatable ailments ‘do not need innovation but simply modest funding and a little imagination in order to distribute drugs to those in need.

McCormick realised that, potentially, Legatum, with its active Foundation, could provide both. He was inspired by the idea that it might be possible to change the lives of millions, to free them from the burden of devastating illness, for as little as 50 cents per person. He picked up the phone. Of that initial conversation with Alan McCormick, Fenwick recalls: ‘I had never had a call from a private investor before, and this call came at a very important time. Up until that point, I had received $55 million from The Bill & Melinda Gates Foundation, but, because we had achieved our initial aims, the funding had been withdrawn. I was very disappointed, and I expressed this to my interviewer at the FT. We were absolutely dedicated to improving lives for 50 cents per person per year, and suddenly, I was talking to someone who found it as exciting as I did, and who could make it possible. Alan invited me to make a proposal to roll out these programmes in four countries, Rwanda, Burundi, Angola and Mozambique. Initially, I was sceptical. It hadn’t occurred to me that a private foundation would support to that level.’

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Alan McCormick visits a Mass Drug Administration in Ethiopia 2014, eight years after he read the Financial Times article on Neglected Tropical Diseases. 

The Good and the Great

What was distinctive about this investment proposition was the opportunity to not just do the good but the great,’ McCormick said, referring to its Foundation’s two step qualification process for philanthropic investment ideas. ‘The good,’ McCormick explained, ‘is changing lives, hopefully profoundly and at scale. The great is changing systems and paradigms of thought. With NTDs we saw achieving both as a distinct possibility.’ When he visited Alan Fenwick’s office in 2006, the term ‘NTDs’ had only just been coined, the concept of ‘Mass Drug Administration’ had never been tested and a new network to coordinate efforts across the NTD space was in nascent formation.  ‘We saw a unique investment opportunity emerging that could catalyse change on a major scale which is why we chose to prove the concept on two small countries so they could act as case studies for others to follow.’

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A man holds out his hand to show the tablets that cure his community of Neglected Tropical Diseases, Burundi 2010.

Legatum’s ability to take the idea forward was charged with the personal philosophy of Christopher Chandler, founder of Legatum, who views business and philanthropy as twin poles with the common goal of addressing unmet needs: ‘What Alan Fenwick taught us was that this was the best buy in global health. We could see a huge potential return on our investment in terms of how many people’s lives would be changed for the better. From the outset, the project was about serving, not saving, the people who needed treatment; we were simply fortunate enough to have had the means to make a difference, and to have met Alan Fenwick at a moment in time when everything was possible.’

In addition to serving the poor, Chandler recognised the opportunity to incubate a better healthcare model: ‘People do better when they know better. The Legatum Foundation offers a challenge to the common misperception that upholds charity as selfless and decries commerce as selfish. Successful people understand the importance of meeting the needs of others. What was obvious to us at the time we started the NTD programme was that the philanthropic marketplace was immature and dysfunctional. International development organisations routinely allocated scarce financial resources inefficiently and with very little accountability. Our goal was to develop a better way by demonstrating that the private sector could voluntarily provide compelling solutions for some of the most intractable problems in public health.’

And thus new territory was chartered in the field of philanthropy and public health. The speed at which the support came about was one of the many remarkable hallmarks of this partnership. Indeed, it is partly because of the speed at which this burgeoning project was able to catalyse, and how rapidly it spread, that it is now necessary to take a longer look at this transformational moment, and to recall the sector as it was at that time.

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A young boy holds a tablet at a Mass Drug Administration against intestinal worms and schistosomiasis in Rwanda, 2010.

Branding NTDs

By 2016, 17 diseases are clustered under the umbrella term ‘Neglected Tropical Diseases’, but this has been a gradual evolution. In 2002, the United Nations set out its Millennium Development Goals (MDGs), as part of a framework for global development. Two MDGs related to health; the fifth to improving maternal health, and the sixth addressed the need to ‘Combat HIV/AIDs, malaria and other diseases’. Vast sums of money were being channeled into preventive programmes for the named diseases - treatment for HIV/AIDs, for example, exceeded $200 per person in 2005 . However, this vague categorisation of ‘other diseases’ not only created a second-tier of global disease management, it also created a funding gap.

Professor Alan Fenwick OBE

Quick to see how this linguistic imprecision could prove problematic, Peter Hotez, President of Sabin Vaccine Institute, and Alan Fenwick were among delegates at a World Health Organization meeting in Berlin in 2003, where, in concert with others, they decided to employ the term ‘Neglected Tropical Diseases’.

As Hotez told the International Business Times in 2015: ‘It was really a branding exercise.’ In his definitive 2008 book, ‘Forgotten People, Forgotten Diseases’ , Hotez further clarified the need for this collective term:

‘We soon realised that the major parasitic infections, as well as some selected bacterial and viral infections could be thought of in aggregate as a group under the banner of the Neglected Tropical Diseases or the NTDs for short. The NTDs are the most common infections of poor people, and also the most important in terms of their health and economic impact. In many respects, their burden of disease rivals those of better-known conditions including HIV/AIDs, even though most people have never heard about NTDs. This continues to surprise us given that NTDs are ancient conditions that plagued humankind for centuries.’

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Burundi - a young boy suffers from Trachoma, a contagious bacterial infection of the eye, which causes blindness.

Bane and Antidote

The diseases, which are caused by parasitic worms, protozoa, and the bacterial agents of leprosy, Buruli ulcer, and trachoma, have a long, indeed ancient, history. As detailed in a 2008 paper by Hotez, ‘Descriptions of leprosy, schistosomiasis, guinea worm, hookworm, trachoma and other NTDs are found in the Bible. ’In fact, one of the diseases, Dracunculiasis medinensis, colloquially known as the Guinea Worm, is believed to be the ‘fiery serpents’ that attacked the Israelites in the desert during their exodus from Egypt.

It was in Egypt, in 1988, that Alan Fenwick began what would become a 14-year project to control schistosomiasis, an infection caused by parasites living in fresh water. Prior to that, he had been the first ever student to study for a Master’s degree in parasitology at the School of Tropical Medicine in London. His unique personal story made him particularly qualified to understand how NTDs were not only responsible for the eventual deaths of hundreds of thousands of the world’s most disenfranchised people, but that their ongoing symptoms create a unbearably heavy impact on educational, cognitive and economic development among those affected. His time in Egypt coincided with a key drug breakthrough, in the form of Praziquantel, 70 million doses of which Fenwick and his team were able to deliver to school-age children. Over the next 14 years, they reduced the prevalence of schistosomiasis from about 60% to 5%.

His passion to change lives through targeted medicine programmes was still abundantly evident when, after that initial exploratory telephone call, Alan Fenwick met with Alan McCormick at his offices in London, in the same building in which Alexander Fleming discovered penicillin. It was also a meeting of minds.

‘I could see Alan was excited,’ remembers Fenwick. ‘He wanted to find real value for money for his organisation’s philanthropy. What I was proposing would be incredibly cost effective.’ Fenwick had pre-existing plans to travel to a health meeting in Cameroon, where he met Burundi’s health minister, with whom he drew up a plan to roll out an integrated control initiative for $4 million and to replicate it in Rwanda, where Legatum also had a presence, for the same cost. The key word in the proposal was ‘integrated’, which would mean implementing a Mass Drug Administration (MDA) in Burundi, a country with a very fragile infrastructure, emerging from over two decades of civil war. While a seemingly obvious approach, this was the first time an MDA of this nature had ever been undertaken. It would prove to be a very significant innovation. The first step was to map the region in order to define the population at risk, and to roll out drug delivery at the national level. Working with Burundi’s Ministry of Health (MoH), Legatum was able to fund the entire project, implementing through their international advisers, Geneva Global, and providing the grant that catalysed the creation of the Global Funding Network for NTD Control.

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A local community organisation manages an MDA in Burundi to reduce NTDs in the region.

A bold experiment

Fenwick’s specific expertise and his research organisation Schistosomiasis Control Initiative (SCI) continued to develop action plans, as technical advisers, with the country’s MoH for an integrated approach. Despite a few inevitable setbacks, by 2008, this method, having previously been eschewed by larger funding organisations as too risky to fund, was accepted as the best performing strategy to treat a whole population.

Burundi performed the first MDA in June 2007, and then two per year, in June and December, until May 2011. In total 31,664,642 treatments were delivered for intestinal worms and schistosomiasis. According to the Public Library of Science (PLOS): ‘Burundi benefitted greatly from this NTD programme, which has resulted in the mapping of the four major NTDs- schistosomiasis, soil transmitted helminths, lymphatic filariasis, and partially trachoma - delivery of treatments reaching the population at risk of infections with good coverage, and a five-year national plan for NTD prevention and control endorsed by WHO and validated by the MoH. The programme has also demonstrated that the integration of NTD treatments with other health initiatives, such as the Expanded Program of Immunization and the use of mobile clinics plus primary schools as additional distribution sites, is a powerful, combined strategy for reaching the whole population at risk.’

By 2012, Burundi had become the first Francophone country in the region to officially launch an integrated national plan to combat NTDs. ‘Burundi’s new national plan offers the clearest indication yet that African governments are committed to eliminating NTDs as a public health threat through integrated programmes,’ said Dr Neeraj Mistry, managing director of the Global Network for Neglected Tropical Diseases. ‘We are proud to have been a part of the efforts that resulted in the development of a national plan spearheaded by the Burundian government and hope this plan will serve as a model for other countries in the region.’

The other country that administered a similarly effective NTD programme in these years was Rwanda, which was supported and implemented by the same team, though in this case, the government was not able to provide the required resources; a symptom of a country still struggling to recover after the 1994 genocide. Nonetheless, this funding from the Legatum Foundation enabled Rwanda to implement a fully integrated control project against seven NTDs.

An Audacious Goal

Mark Stoleson, CEO of Legatum, is justifiably proud of the Foundation’s achievements: ‘We did what had never been done. In Rwanda and Burundi, we took a whole country, drew a line, mapped it for disease prevalence and dosed the people who needed it. We incubated the project, then set it free. It was a big, hairy, audacious goal, but we did it.’

A personal letter, written in 2008, by the then head of Global Network to Alan McCormick, further reveals the far-reaching nature of Legatum’s commitment to the populations of these two struggling countries:

Ellen Agler and Mark Stoleson in Ethiopia, 2014. By this date the END Fund had treated 76.5 million beneficiaries. 

‘You put the Global Network on the map and empowered us to show the world what we could achieve. Over the last few years I have helped raise almost $75 million from the Gates Foundation, however, your initial investment in the Global Network is responsible for every additional dollar raised and every new opportunity realized. In 2006, we approached the [Gates] Foundation for seed funding and we were rejected. In time they would change their mind, but that was after you bought us a year to show them just how powerful our united voices could be in support of the poor.’

Other significant effects of this leap of faith include match-funding from a variety of partners all over the world. Pharmaceutical companies have donated the majority of medicines - GlaxoSmithKline, Johnson & Johnson, Merck, Pfizer, and Merck Serono are all key players. Fenwick has observed the industry’s participation for years, since his experience with Praziquantel in Egypt, which became affordable only because of the involvement of a South Korean company, Shin Poong, which developed a new analytical method for producing the drug.

This led to a vast price drop; a drug that had been previously been bought and distributed on a very small scale only by the German government, could now be used to help millions. The newly affordable drug meant Fenwick and his team could cure a child for 20 cents. Fenwick understands well the centrality of the drug companies’ cooperation to the entire enterprise:

‘The pharmaceutical companies have bought into it and they have entered, with their corporate responsibility, vast donations. We will receive 250 million tablets of Praziquantel every year from 2016 to 2020. GSK are donating a billion tablets of Albendazole every year from now until 2020 to get rid of both intestinal worms and lymphatic filariasis. Merck in America are donating millions of tablets every year of… hundreds of millions of Mectizan, which is used for river blindness and for lymphatic filariasis. These diseases are being hard hit and the drugs are being made freely available.’

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Bill Campbell, Chairman of the END Fund, takes part in an MDA with his daughter in Kenya, 2013. Photo: ©END Fund 

The beginning of the END

The pioneering spirit that inspired the initial telephone call did not disappear. There was a vital to ensure continued support for those still afflicted or threatened by NTDs - a figure still hovering around the one billion mark worldwide. Legatum enshrined its commitment in the form of the END Fund, a one-of-a-kind organisation set up in 2012 with a vision to eradicate NTDs through raising an initial $100 million but with the bigger goal to mobilise $1 billion.

‘We were attending an event at the House of Lords in the UK when Christopher asked Alan Fenwick how much it would cost to rid Africa of NTDs,’ recalls McCormick. ‘Alan replied that between $1 - $2 billion would be required to bring down infection rates to manageable levels and in many cases eradicate these diseases.’ Legatum concluded that while this was a huge sum of money, in terms of global health, it was paltry, and, moreover, perfectly realisable through the right vehicle.

The END Fund was envisaged as a new type of vehicle designed to encourage greater collaboration for philanthropists and to provide high-impact opportunities for public-private partnerships. Doug Balfour, CEO of Legatum’s implementing arm, Geneva Global, was instrumental in the creation of the END Fund:

‘Given the lack of precedent, we took the creation of a financial fund seriously and created a 130 page prospectus, modelled on the idea of an investment fund. With hindsight, we didn’t need to go quite that far, but it was a great document for thinking the idea through. If truth be told, our first iteration of the fund misfired when we hired a group of fund raisers with the idea that no staff would be required for the fund. It was a difficult job because there was no precedent - no alumni, no donors - but we succeed only when we realised ideas need champions and the END Fund’s Chairman was appointed, Bill Campbell and subsequently a CEO was hired, Ellen Agler. Within a year we had $6.5 million of commitments, as well as an additional $10 million from Legatum.’


Along with a group of END Fund supporters, Mark Stoleson, Alan McCormick, and END Fund CEO, Ellen Agler, conquer Mount Kilimanjaro to raise funds to end NTDs, 2014.

An Extended Family

Bill Campbell, founding Chair of the END Fund, is Senior Advisor to the Chairman of JPMorgan Chase & Co and President of Sanoch Management. Prior to this he had served as Chairman of Chase Card Services and Visa International. ‘I was looking to do something good with the latter part of my life and in 2001, together with my wife and daughters, I created the Campbell Family Foundation,’ explains Campbell. Campbell and his family had been searching for causes that they could contribute more than just money to – a cause that would enable them to literally ‘touch’ the philanthropy they were involved in – yet so far they had been somewhat unsuccessful in pinpointing such a model.

Bill Campbell recalls a conversation with a friend in Washington who knew that he was interested in global health, who told him: ‘You need to come to Rwanda and see a mass drug administration happening for children affected by Neglected Tropical Diseases.’

By chance, the Campbell family arrived in Rwanda at exactly the same time as a group from Legatum: ‘I met with Christopher Chandler and we went to a school where a group of children were being handed these pills that would keep these awful bugs at bay. I was sold from that point on. Legatum were already active in the project but when Christopher actually saw the children being given these pills I could see that he was convinced too.

‘The END Fund is special largely because of the Legatum involvement. They had a clear objective right from the beginning that they would try to be as efficient in the not-for-profit world as they were in the for-profit world. I have a similar kind of mission on a much smaller budget, and our family foundation lined up very well with Legatum’s vision for the END Fund, to create bang for the buck,’ he recalls.

 

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Ellen Agler, comforts a boy in Mali who is suffering from Elephantiasis, a parasitic infection. Photo: Lindsay Branham, Jonathan Olinger ©END Fund

NTD control

Ellen Agler, CEO of the END Fund, explained the strategic importance of a dedicated fund for NTD control:

‘There was little private philanthropy that focused on NTD control, so we provide an opportunity for humanitarians or philanthropists to invest effectively in this cause. As a fund, we landscape the entire space, and look for investment opportunities. We map who is doing what in the field, whether that’s governments, NGOs, local organisations, in order to find the gaps. Into these gaps, we provide support, technical assistance, access to drug donation programmes, and then we grant to agencies in the field. We have a partnership model that allows us to be very nimble and flexible. We have 16 people working for us, but have reached over 85 million people. We like to think we punch above our weight!’

Mark Stoleson believes the END Fund is a model for the future: ’We are demonstrating that private philanthropy is truly innovative. It’s private crowd-funding on a massive scale. We are leading a global trend in relation to tackling world-scale projects but also enabling personal transformation in the process. When you bring together a community of commercially-minded people, you can run a really lean team, one which is highly efficient, that makes an outsize impact. It’s a compelling model. It is a realisation of the Legatum philosophy: take risks, and then give it all away.’

The END Fund, described by Peter Hotez as ‘the Medecins Sans Frontieres of NTDs’ managed the second mapping of Rwanda in 2014, in which 20,000 school children were surveyed for intestinal worms and schistosomiasis. These results will be used to inform treatment strategy in 2015, with a view to eliminating NTDs, specifically schistosomiasis, in the future.

A young boy is measured at a Mass Drug Administration in Burundi, 2010.

The other foundational investment for the END Fund, Burundi, has seen a move in 2014 from treatment to post-treatment surveillance, with trachoma now described as ‘no longer a public health concern’. The success of the programme grew from the marrying of private philanthropic investment with a country-led plan to administer twice-yearly MDA, as well as the implementation of sanitation and hygiene education programmes.

Ellen Agler spent time with school children in Rwanda in 2014, in whom she noticed a remarkable change: ‘The school I was visiting was next to a lake, where of course all the kids swam. In my last visit, 69% had tested positive.

Now it was down to zero! It’s an amazing transformation. The kids are so much taller, now the nutrients are not being sucked from them. One of the worst physical symptoms - urinating blood - no longer happens. There’s less absenteeism in the schools - and the kids can concentrate in class.’

Again, it is the integrated approach to implementation that is making the biggest difference, as well as educating in relation to using latrines, wearing shoes, and using soap. Some of the schools have even initiated hygiene clubs, in which children sing songs about the importance of using soap to stay disease-free. Mother and child health weeks always have higher participation if they involve worming, as well as HPV vaccinations, for example. ‘NTD prevention is a driver for whole health services,’ says Agler. ‘They are all so proud of what they have achieved; I see so much ownership and leadership and pride in the community.’

 

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Alan McCormick, Doug Balfour and Mark Stoleson visit Ethiopia in 2014 to see a Mass Drug Administration taking place in a local school.

Collaborative Vision

Legatum’s involvement with the END Fund remains very strong; its role continuing to flourish, as adviser, donor and active partner.

‘From the beginning, in terms of realising a dream, following an idea, or sowing seeds, Legatum have provided the most useful kind of support,’ says Agler. ‘Certainly not just in terms of funding but with marketing, legal support, going into the field to visit programmes, hiring employees. I still speak with Alan every two weeks. Legatum are there, wherever they are needed. They are absolutely exceptional - amazing partners.’

The main achievement of Legatum in relation to NTDs over the past decade can be encapsulated in the 110 million treatments their funding has helped to deliver. Their work has also led to Alan Fenwick’s organisation SCI winning the prestigious Queen’s Anniversary Prize 2008. Fenwick’s gratitude and praise is grounded in the fact that Legatum were willing to fund MDA when other funders considered it either too risky or simply unproven.

‘Legatum have shown themselves to be world leaders in a cross section of support to poverty in the world, not just to health, not just to NGOs, but to supporting small business and other projects when that funding was just not coming from anywhere else,’ he says.

The eventual elimination of NTDs in the developing world will be a critical marker for poverty alleviation. Much has already changed since that fateful telephone call back in 2006. Reflecting on Legatum’s extraordinary journey in this sector, Alan McCormick says:

‘The Rwanda and Burundi projects Legatum catalysed in 2006 were an experiment. They have accomplished far in excess of what we originally envisaged but that has now given us and others a vision to see these diseases eradicated in our lifetime. It can be done and it should be done. The END Fund is a beautiful example of what can be done when people with a vision collaborate and work together on a problem.

“Legatum’s initial $8 million investment brought together for the first time all the actors, from Legatum as funders, doctors, pharmaceutical companies, delivery organisations, local communities, government health departments and schools. Together, we solved the logistical problem of mapping the diseases and delivering the drugs to where they were needed, on a massive scale. The rest, as they say, is history, or at least, is becoming so. We can at last look forward to a time when these diseases are a footnote to the story of the developing world.”

Article by Max Houghton
Max Houghton is a writer, editor and curator in the field of contemporary documentary photography. She is Course Leader of MA Photojournalism and Documentary Photography at London College of Communication, University of the Arts, London, where she is an active member of its research centre, PARC. Her research interests include aesthetics and justice, text/image relations and the work of W G Sebald. She writes regularly for the international arts press, including FOAM, Photoworks and The Daily Telegraph, and is writing a book on emerging female photographers to be published by Thames & Hudson Autumn 2017. Max hosts regular public talks in London, at The Photographers’ Gallery, Royal Institution and The Frontline Club.

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Ellen Agler, CEO of the END Fund, speaks with an elderly man suffering from Trachoma which has made him blind.  Photo: Lindsay Branham, Jonathan Olinger ©END Fund