Neglected tropical diseases (NTDs) disproportionately affect people living in poverty, some of whom may be difficult to reach through traditional mass drug administration (MDA). For instance, an estimated 16.2 million people were newly displaced in 2017, many within NTD-endemic areas. While evidence shows that school-based treatment can be extremely cost-effective, estimates of out-of-school children reach nearly 263 million, making them tough to reach. Moreover, girls are further impacted by this problem – for every 100 boys of primary school age who are not in school, there are 123 girls in the same situation. Our program teams are constantly exploring potential solutions to these challenges, which you can read about in this post on Kenya’s nomadic and remote communities, and here in a post on expanding deworming to migrant populations in India.
However, hard-to-reach population segments are not unique to school-based deworming or to Evidence Action’s programs. We have attended the NTD NGO Network (NNN) conference for the past several years to share lessons from our work, and learn from our colleagues and partners in the NTD space. In September of this year, members of our global deworming team again participated in the conference in Addis Ababa, Ethiopia, and convened a workshop titled Increasing inclusion of hard-to-reach groups using lessons and strategies from within and outside the NTD community. We wanted to create a space to share practical resources and successful strategies that can make a measurable difference in reaching these groups, convening a group of experts, including Dr. Kaushlendra Kumar from Evidence Action India (on behalf of Dr. Sila Deb, Ministry of Health and Family Welfare, Government of India); Dr. Fiona Fleming with Schistosomiasis Control Initiative (SCI); Dr. Mary Hodges with Helen Keller International (HKI); and Ms. Ellyn Ogden with USAID.
Our all-star panel recapped lessons learned from their respective government programs, including:
USAID’s polio program’s use of GIS mapping to find untreated areas within communities and intensify mobilization efforts towards those who need them most.
HKI in Sierra Leone has seen success using portable projectors (setting up under a tree, at a gathering point, or a market) to display program videos or messaging.
India’s mobile kiosks can go to areas where their hard-to-reach populations are more likely found, rather than only relying on fixed distribution points.
“This was one of the most practical sessions for me in terms of coming up with concrete recommendations I could make to our government partners who face challenges in treating school-age children who are non-enrolled or non-attending. One example would be exploring options to engage with religious leaders to modify outreach strategies in certain communities.”
— Katherine Williams, Evidence Action, Senior Manager – Deworm the World Africa Region
Lessons Learned
So many useful sessions, so little time! Fortunately, we had a team of five at the conference to soak in as much information as possible. The NTD space is a small community working to solve big problems, and if we hope to meet our targets, we need outlets such as the NNN to learn from one another’s best practices.
“Nothing about us without us,” was a quote that stood out from a session on NTD messaging and storytelling, suggesting that NTD stories should come from local, affected people. For instance, op-eds are an accessible mechanism to ensure that local voices are heard. Evidence Action strives to do just that, including this story about two girls who have received five years of deworming treatment in Western Kenya.
Our team supports the Government of Kenya’s lymphatic filariasis (LF) program. LF can cause swelling of the limbs and genitals, and is often stigmatizing. In a session on reducing stigma in NTDs, we learned about human-rights based approaches to ensure people affected by NTDs are mainstreamed into the larger social, cultural, and political life. Peer-to-peer counseling pairs NTD veterans with those newly affected by NTDs. The Leprosy Mission created and shared this toolkit for understanding and challenging leprosy-related stigma in India, which can be tailored and applied to other diseases and regions, including the geographies where we work.
Our partners in Ethiopia, SCI and the Federal Ministry of Health, led a workshop on building the capacity of the health workforce to facilitate sustainable programs. The session featured an innovative mentoring program, which pairs federal and regional level government officials in a mentor / mentee relationship, with the goal of increasing ownership and autonomy at the regional level. We learned that volunteers and community health workers are motivated by pride for their community, and not only by tangible incentives; program partners should brainstorm recognition methods as a mechanism for sustainable motivation and retention.
A doctor who works directly with NTD-affected individuals, a representative from a national Ministry of Health, and a colleague from the World Health Organization’s global headquarters talked about their perspectives on how compassion underpins NTD programs and reminded us that even on days spent behind a computer screen, it can still be one of the driving motives for the tasks we do everyday, and reinforced the importance of including compassion into the capacity building work we do with our government partners.
If the NTD community hopes to beat STH and schistosomiasis, we must look at where the current gaps are. Together with SCI, we presented findings on the current gaps in treatment coverage and funding for these specific diseases. It is extremely important that other partners contribute additional information and data, which will be extremely useful for the entire NTD community to use in prioritizing the next steps in our work, better understanding how disease-specific achievements affect other NTDs, and advocating for investments needed to fill these gaps.
Overall, the NNN conference reinforced the importance of shared learning, partnerships, and capacity building in the NTD space. Since Evidence Action leads by putting evidence first, it it critical for us to consider what is working in other programs and countries. Many NTD programs are doing innovative work, and it is essential that we are sharing ideas and tools, and building strategic partnerships to beat NTDs. “Our programs across countries can learn a lot from each other. Country programs are at different stages of maturity and some countries have succeeded in addressing major challenges that others are still struggling with. We need to improve on information sharing and exchanges across countries, making it more systematic and seamless,” Ima Chima, Evidence Action’s Deworm the World Lead in Nigeria, reflects on her main takeaway from NNN. To learn more about what was discussed at the NNN, you can check out the presentations (including ours) here.