Eradicating disease,
Ellen Agler, chief executive of The END Fund, tells Mustafa Alrawi about her mission to raise awareness at the World Economic Forum
Ellen Agler tells 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 (and) we have a lot to deal with,” she says. Ms Agler has come to the forum to convince leaders and executives to put the effort to end the five most prevalent neglected tropical diseases – intestinal worms, schistosomiasis, trachoma, river blindness and lymphatic filariasis – on the agenda.
Together, 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.
Sheikh Zayed was one of the earliest to offer that political will, 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. In November, the UAE’s support entered its latest phase with the launch of the US$100 million (Dh367m) Reaching the Last Mile Fund.
Sheikh Mohammed bin Zayed, Crown Prince of Abu Dhabi and Deputy Supreme Commander of the Armed Forces, 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 and $30m from the British government.
The END Fund was appointed to manage it and allocate funding – an honour, says Ms Agler, who admits getting the news was a surprise although 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,” Ms Agler says.
It acts like a broker between implementers and funders and offers “an easy onramp” 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.
END 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. It will also look for where there might be gaps, Ms Agler says.
“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 co-ordinate with the others funding in the space,” she says.
This allows the efforts of a team of 25 to be highly
effective, resulting in END’s investments supporting the treatment of more than 90 million people last year.
Technological developments 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 this year, underscores her efforts to lift these neglected diseases into 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 found 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 END.
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?” END educates people about these neglected tropical diseases.
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 typically have little quality of life.
“We are looking for people to be more knowledgeable about these diseases, they are called neglected for a reason,” Ms Agler says. “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 was prevalent in Latin America except for the border of Brazil and Venezuela,” she says.
In the case of lymphatic filariasis, “300 million who were taking medicine three weeks ago no longer are because it has been eliminated in 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,” Ms Agler says.
You can have all the money in the world but if you don’t have the political will it won’t be enough ELLEN AGLER The END Fund