SAN FRANCISCO — When Jeff Glenn conducted interviews on neglected tropical diseases, a group of parasitic and bacterial diseases that affect the world’s poorest, he found there was a certain topic that people did not want to discuss on the record.
“People would ask to go off-record, and then say something about how we're completely ignoring water and sanitation, and that’s going to hurt us in the long run, because we're not going to reach the goals with just mass drug administration,” he said.
Glenn, who is now a professor of public health, included these interviews in his dissertation on systems thinking and NTDs, where he drew a parallel between NTDs and other eradication efforts that share “the allure of an end.”
Funding for NTDs has increased dramatically over the past few years, driven in part by the message that raising enough money to distribute free drugs will solve the problem. Still, the world is falling short of goals like those outlined in the World Health Organization’s roadmap on NTDs setting a plan for the control of 17 NTDs by 2020.
While NTDs are often portrayed as simple problems with easy solutions, the reality is far more complex. The prioritization of interventions such as mass drug administration, or MDAs, over other critical interventions including water and sanitation, will not solve the problem. And the research Glenn did as a systems change fellow at the END Fund points to some of the opportunities and challenges for bringing systems change to NTDs and other global health priorities.
The evolution of the sector
The idea for the END Fund, which raises funding, manages grants, and provides technical assistance for intestinal worms, river blindness, lymphatic filariasis, schistosomiasis, and trachoma, began in 2006.
Alan McCormick, a partner a Legatum, a private investment firm headquartered in Dubai, read a newspaper article in The Financial Times explaining how ending NTDs required modest funding to distribute drugs to those in need.
“Initially we conceived of it purely as a financing vehicle,” he said. “But we came to realize there was a web of people who had dedicated their lives to this cause and what was lacking was some coordination, some vision, some leadership.”
After testing the model in Burundi and Rwanda, in 2012, Legatum established the END Fund, with the goal of bringing private donors together to invest in NTD control. The firm recruited Doug Balfour of Geneva Global, who was doing a number of systems change projects for Legatum, to design the organization. The END Fund has brought together some of the organizations that previously worked on specific NTDs, and it now joins major donors including the United States and United Kingdom governments and the Bill & Melinda Gates Foundation in shaping the NTD agenda.
END Fund CEO Ellen Agler is someone Jeff Walker, an expert on systems change and global health, would call a “systems entrepreneur.”
Walker, who coined the term, said Agler recognizes that complex problems require close collaborations across sectors, noting how she has brought together organizations that were previously working in silos, helped them join forces, and acted as an honest broker in terms of how to prioritize resource allocation. It was Walker who suggested Glenn pursue his dissertation research as a fellow at the END Fund and paid for his fellowship.
While donations by the pharmaceutical industry have driven progress on NTDs, they are also part of the reason for the overemphasis on MDAs, and more recent discussions on other approaches needed to end NTDs point to sophistication of the sector, Agler said.
“People now say there is an overreliance on MDA, and that’s kind of a good problem to have,” she said.
Interest in deworming
Maria Rebollo Polo, who leads WHO’s Expanded Special Project for Elimination of Neglected Tropical Diseases, spent time with a village leader in Malawi last year, talking with him about why he might consider building a latrine for his village.
She was there for an MDA — which WHO views as an opportunity to take an integrated approach on five NTDs — and also worked to incorporate education on issues such as water, sanitation, and hygiene.
Rebollo Polo said these integrated efforts are being thwarted by groups that favor more targeted interventions, including deworming campaigns in schools. For example, four of the top nine charities recommended by GiveWell, a nonprofit that carries out in depth analysis on charities, conduct deworming campaigns. This is driving more money to this specific intervention, which is simple and measurable and cost-effective, rather than to the more comprehensive approach suggested by WHO.
“We would expect the cost-effectiveness for treatment of NTDs to vary a lot from disease to disease,” said Catherine Hollander, a research analyst at GiveWell. She explained that GiveWell had reviewed the evidence and cost-effectiveness for the major NTDs, and based on that research, deworming appeared to be more cost-effective than other interventions. “We’d welcome additional data or information that would change our view of which approach we should focus on.”
Because the END Fund is a top charity for its work on deworming only, the organization faces constraints in the ways it can use its funds on the ground, and cannot always take the integrated approach WHO sees as essential in controlling NTDs.
WASH interventions are also critical for preventing NTDs. For example, face washing can reduce the prevalence of trachoma, the leading cause of infectious blindness. And moving from open defecation to toilets or latrines removes the human feces that provides breeding ground for the flies that transmit the disease.
Sanitation alone would prevent several of these NTDs, whereas with deworming and MDAs, organizations have to keep going back, said Susan Davis of Improve International, a WASH-focused organization. She explained that it might not be in the interest of some of these NTD-focused organizations to solve the underlying causes of these diseases, because it means they get to keep solving the problem over and over again.
Asking the hard questions
Bill Campbell, founding board chair at the END Fund, was inspired to donate his own money to the NTD effort after seeing an MDA in Rwanda. But he has since learned how critical efforts such as WASH will be in ending NTDs. The board is currently focused on ways to ensure the long-term sustainability of their efforts, Campbell said, including getting more philanthropists on the African continent invested in ending NTDs and building linkages with health systems.
“NTDs don’t rely on shared systems the same way that many other health programs do, since the mass drug administrations through which the vast majority of NTD drugs are delivered are an inherently vertical intervention,” said Katey Owen, who leads NTD work at the Gates Foundation. “In some ways, NTD programs act as their own platform that reaches users and locations typical health systems often don’t.”
But she said that doesn’t mean NTDs don’t rely on strong health systems, especially when it comes to treating people who show symptoms of NTD infection. For example, mild itching and irritation of the eyes could be a sign of trachoma, which can ultimately turn eyelids inward and cause blindness.
Glenn made three recommendations for the END Fund to enhance its systems change efforts: using systems thinking to generate collective learning, using grants to catalyze new approaches, and mobilizing the NTD community to address these more systemic challenges.
“The END Fund has both the status and flexibility required to push the rest of the community to deal with the challenging issues surfaced here in order to generate learning around more sustainable solutions for NTDs,” Glenn writes in his dissertation.
The success or failure of NTD elimination efforts may depend on the degree to which stakeholders can start to ask the hard questions raised in the report on systems change. “Oversimplifying NTDs is what has led to all of the progress in NTDs but if we oversimplify it too much we're not going to reach the goals we promised everyone we would reach,” Glenn said.