Davos 2018: fund executive pushes neglected diseases to the fore

Ellen Agler seeks political backing for the END Fund's bid to eradicate river blindness, intestinal worms, schistosomiasis, trachoma and lymphatic filariasis

Ellen Agler is attending the World Economic Forum 2018 to highlight diseases that affect millions but do not make the headlines. Photo Courtesy The END Fund

Ellen Agler is telling me a story about optimism and progress in a world which, according to the theme of what has brought us together, the World Economic Forum annual meeting, is fractured.

Ms Agler is chief executive of the END Fund, which is dedicated to controlling and eliminating neglected tropical diseases. The good news, she says, is that it can be done.

"People need to be slowly checking problems off the list, we have a lot to deal with in the world," she says as we sit in a noisy and crowded hotel lobby in Davos. She has come to the forum to convince leaders and executives to put on the agenda the effort to end the five most prevalent neglected tropical diseases - intestinal worms, schistosomiasis, trachoma, river blindness and lymphatic filariasis. They affect about 1.5 billion people, 875 million of them children.

"Getting that high level of attention and engagement can all of a sudden get you the political will. You can have all the money in the world but if you don't have the political will and local partnerships it won't be enough," she says.

The UAE's Sheikh Zayed was one of the earliest to offer that political will in this area, supporting  efforts since 1986 to eradicate Guinea worm, a parasite that once infected hundreds of thousands but has now been reduced to a handful of cases in Africa, thanks to a global eradication campaign. In November, the UAE's support entered its latest phase with the launch of the $100 million (Dh367m) Reaching the Last Mile Fund. Sheikh Mohammed bin Zayed, Crown Prince of Abu Dhabi, has contributed $20m to the new fund, which is aimed at eradicating river blindness and lymphatic filariasis in 10 years in seven countries, mainly in Africa and Yemen. It will receive another $20m from the Bill and Melinda Gates Foundation.

The END Fund was appointed to manage it and allocate where funding goes - an honour, says Ms Agler, who admits getting the news was a surprise even though it is a good fit.

"Because river blindness and lymphatic filariasis were two of our focus areas that we already had a track record with we're managing it in a similar way but [it is] a separate fund just targeting these diseases and the seven countries," she says.

It is a unique structure for the END Fund, which is active in 27 countries with dozens of local partners.

"The END Fund was set up with the idea of aggregating private philanthropy, funding from foundations, high net worth individuals, corporations and others," says Ms Agler.

It acts like a broker between implementers and funders and offers "an easy on ramp" for those that do not necessarily have the scientific knowledge and programmes of implementation required for a disease to be eradicated, but want to help make it happen.

The END Fund can explain what is happening on neglected tropical diseases and identify who is doing what, from governments to external aid donors to local partners. It will assess the status of domestic financing and also see if the disease has been mapped, find a baseline and understand the extent of treatment available, and look for where there might be gaps, Ms Agler explains.

"Our technical team and programmes team is landscaping that. It is a highly dynamic space, [with] hundreds of partners and the complexities of each disease, so that sector expertise is what we use to then recommend investments and also ways to coordinate with the others funding in the space," she says.

This allows the efforts of a relatively small team of 25 to be "high-leverage", resulting in the END Fund's investments supporting the treatment of more than 90 million people last year. Technological developments in recent years have reduced the need for directly employing many more people on the ground.

"Also we have identified great local partners. So, if you count up the number of people of the organisations it would be a lot more than our core team," she says.

Ms Agler's book, Treatment Under the Big Tree, due out later this year, underscores her passion for her work and her efforts to lift these neglected diseases into the mainstream consciousness.

"When I first joined this sector about six years ago, I found that most of the things that were written about these diseases or the pioneers who had invented medicines or finding treatments in the field, overcoming significant obstacles - there wasn't a lot that wasn't peer reviewed scientific literature," says Ms Agler, who worked for Operation Smile before joining the END Fund.

One story in the book relates how pioneer Lady Jean Wilson coined the phrase river blindness for onchocerciasis because she said "how can I raise funds for it if I can't pronounce it".  The END Fund educates people about these neglected tropical diseases which are relatively obscure compared to Aids or cancer. The fact that they typically are not considered fatal – although death can result – means that they do not immediately appear to be a priority. However, sufferers usually have little quality of life.

"We are looking for people to be more knowledgeable about these diseases, they are called neglected for a reason," says Ms Agler. "We have a programme to educate people, take them into the field to see what the impact is, really learn about the diseases."

What can be inspiring, she says, is that these five diseases can be eradicated, within a short period.

"River blindness has been ended in almost all the countries where it is prevalent in Latin America except for the border of Brazil and Venezuela," she says. In the case of lymphatic filariasis, "300 million that were taking medicine three weeks ago no longer are because it has been eliminated in the areas they live".

"We are at a pivotal point in history where we know the drugs, we know the technology and the gap is really about delivering."

Companies can donate items, for example medicines, or help with the supply chain as well as donate money. In the UAE, key partners include Mohammed Al Ansari of Al Ansari Exchange.

"The UAE is a significant part of the DNA of the END Fund," says Ms Agler.