The long and winding road to elimination
By Lara Dahan
This blog is part of a new series from GLIDE, featuring personal reflections from the team – what they’ve learned, what they found interesting, and what they’re encouraged by as we work to consign preventable infectious diseases of poverty to the history books.
The journey to disease elimination is long, arduous but deeply meaningful to those who are impacted by Neglected Tropical Diseases (NTDs) worldwide. NTDs not only create undue suffering to over 1.7 billion people, but also cost developing communities of dollars each year in direct health costs, loss of productivity, and reduced socio-economic and educational attainment. When approaching the task of worldwide disease elimination, it’s hard to know where to start, balancing need, opportunity and impact is both delicate and complex.
Onchocerciasis, also known as river blindness, is an NTD contracted from a parasitic worm transmitted by black flies often found in and around bodies of fast-flowing water. The disease is endemic across 30 African countries, primarily in West, Central and East Africa (WHO). Once people are bitten by the infected blackfly, they experience skin depigmentation and severe itching. In its most extreme form, the disease can lead to visual impairment and irreversible blindness and is one of the leading causes of preventable blindness worldwide, impacting almost half a million people.
As a new global health institute dedicated to accelerating the elimination of preventable human diseases of poverty including malaria, polio, lymphatic filariasis, and onchocerciasis, GLIDE is committed to closing gaps in healthcare to help reach the “last mile” of our disease eradication efforts. We acknowledge that to “leave no one behind” calls for a delicate balance of resource allocation to forge sustainable pathways towards disease elimination. A crucial step in eliminating onchocerciasis requires that we understand “transmission dynamics” where an infectious disease is prevalent and how it is transmitted in order to direct treatment and develop approaches to achieve its elimination. In Malawi, where onchocerciasis is endemic, ‘transmission assessment activities’ began to map and treat onchocerciasis in 2014 by establishing catching sites to determine disease prevalence and assess transmission. While many sites yielded results, Chiradzulu and Neno districts were not productive, and no adult flies could be collected for sampling and therefore, the need for treatment could not be determined. After I joined GLIDE mid-pandemic in June 2020 from a sustainable development background, I was tasked with supporting a partnership with the Malawi Ministry of Health’s (MoH) Malawi Onchocerciasis Control Program (MOCP) to fill this important data gap from previous onchocerciasis transmission assessments. This work would be led by Laston Sitima, local Onchocerciasis Control Program Manager who has been driving forward Malawi’s efforts to eliminate river blindness since 1997. Over six-months, GLIDE would;
- Support transmission assessments for onchocerciasis through black fly collection and analysis in two regions (Neno and Chiradzulu) where there was previously no data.
- Support the convening of Malawi’s National Onchocerciasis Elimination Committee (NOEC), bringing together key national and international actors to chart a way forward towards the elimination of onchocerciasis.
Transmission assessment activities began in Neno in April 2020, however sampling in Chiradzulu was abandoned early as no black fly breeding and catching sites were identified. Fortunately, the black fly samples collected in Neno were sufficient and sent for analysis. While capacity exists in Malawi to process the samples in country, it is currently more cost-effective to send the samples to a WHO lab in Ouagadougou, Burkina Faso some 7,256 km away. Traditionally, samples were couriered by a visiting entomologist but, with COVID travel restrictions and lock downs, this method was no longer possible. Unconventional solutions were needed and so Laston turned to have the transfers sent via FedEx who ultimately could not transport the samples due to the preservatives used to protect the samples. Ultimately, after searching for weeks, Laston was able to identify a courier service, Skynet, whose policy would allow for the samples to be transported to the lab. The samples arrived in good condition but could not be quickly processed due to a focus on COVID-19 and a shortage of reagents. Certainly, delays are common in the NTD space, however, it was clear to me that the ongoing pandemic threatened to derail progress on our journey towards the elimination of onchocerciasis in Malawi in ways I was yet to realise.
Results from the transmission assessments conducted in Malawi were eventually delivered and later presented to the NOEC. The Chair highlighted the need for an overall strategy for onchocerciasis that aimed to fill additional data gaps, increase in-country capacity, and mobilise resources effectively. Having come to the end of this piece of work we were left wondering what next?
Over the same period, I came across a call for inputs by the WHO requesting stakeholders to review and provide feedback to the NTD Master Plan Guidance that was released in 2021. NTD Master Plans are comprehensive multi-year plans for the elimination and control of NTDs and are essential components for effective planning and implementation of sustainable NTD programmes. The guidance builds from the WHO’s NTD roadmap Ending the Neglect to Attain the Sustainable Development Goals: A roadmap for neglected tropical diseases 2021-2030 that aims to support countries in developing effective NTD control and elimination strategies around three core pillars 1) Accelerating programmatic action; 2) Intensifying cross-cutting approaches; and 3) Changing operating models and culture to facilitate country ownership. GLIDE welcomed the introduction of the new roadmap as well as the NTD Master Plan Guidance and as a team, provided feedback to the guidance and reached out within our network to understand how countries are approaching this important exercise.
I asked Laston how the Ministry would be contributing to this process and learned he was in initial discussions with the MoH and international organisations to begin designing an NTD Master Plan to guide national programs from 2021-2025. As a new organisation, the GLIDE team and I saw this as a fantastic opportunity to better understand the considerations when developing elimination strategies and to support in-country actors in this crucial step to elimination. I would soon realise that our goal of accelerating the elimination of onchocerciasis in Malawi would end up evolving into learnings from many different areas of disease elimination that extend far beyond the diseases within GLIDE’s mandate.
We started by working with Laston to convene all interested stakeholders in one meeting to empower the local process, provide technical advice and fill important gaps in the budget. The group began to meet monthly, to review the Master plan development roadmap pulled together by an NTD Coordinator seconded in the MoH by FCDO’s ASCEND program which was deeply invested in this process. We were making good progress until the announcement of the withdrawal of FCDO funding which cast a shadow of uncertainty on us all. The pandemic strikes again. Would the NTD coordinator who was seconded in the ministry by ASCEND be able to continue her work? Would we be able to find partners willing to join our group to drive this forward in such uncertain times? Would the partners be able to fill the budget shortfall in light of ASCEND withdrawal? Fortunately, the unwavering commitment of the NTD community prevailed and Laston stepped into the coordinator position. Together we were able to maintain momentum to fund and develop an NTD Master Plan for Malawi alongside a commitment from partners including, WHO Malawi, SCI Foundation, GIZ and Sightsavers.
The development of an NTD Master Plan for Malawi is now well underway with expected delivery and dissemination expected in mid-2022. Thus far the learnings have been numerous, what started as a small-scale initiative to conduct transmission assessment in two districts has evolved into a multi-stakeholder process spanning several development areas. I am particularly impressed by the adaptability and resilience of program managers to manage uncertainty and the commitment of the partners to “leave no one” behind on the journey to elimination. If I’ve learned anything in my time working in global health it’s that successful elimination strategies are underpinned by the collaboration of passionate and committed individuals that make up disease elimination programs. With that, anything is possible.
Looking ahead we aim to continue our support to Malawi’s NTD Master Plan well after the delivery of the strategy, to ensure that the objectives of the plan are appropriately funded and realised. This means expanding our engagement to advocate for the Master Plan and its adoption in all relevant Ministries so that we can one day, see all endemic diseases of Malawi consigned to the history books.
- World Health Organization. Integrating neglected tropical diseases into global health and development: fourth WHO report on neglected tropical diseases. World Health Organization; 2017
Lara Dahan is a Program and Partnerships Manager at GLIDE. She is a global development professional who is passionate about advancing the international sustainability agenda in the Arab region and beyond. Before coming to GLIDE, Lara received a Masters degree in Environmental Law and Sustainable Development from SOAS University London and has worked for prestigious agencies in Paris including I4CE – Institute for Climate Economics and the UN Sustainable Development Solutions Network (SDSN) where she gained a wealth of experience working on innovative solutions and approaches to achieve the Sustainable Development Goals.
Looking forward, Lara aspires to leverage her experiences and knowledge towards advancing the global elimination of NTDs through a multifaceted, crosscutting approach to disease elimination.