By Simon Bush, Director of Neglected Tropical Diseases at Sightsavers

“The neglected tropical disease (NTD) agenda would not have been feasible without the Community Directed Treatment with Ivermectin (CDTI) framework.”

This is the conclusion of a recent paper commissioned by Sightsavers on combating onchocerciasis – or river blindness. What it means in less formal terms is that involving communities in the distribution of river blindness treatments has proven to be effective, sustainable and a method that can be used to combat other diseases.  What it also means is the role played by non-governmental development organisations (NGDOs), such as Sightsavers, is fundamental to tackling, and ultimately eliminating, NTDs.

The river blindness tale has been told many times before, and readers of this blog may well be familiar with its treatment, Mectizan® (ivermectin*), which is donated for mass distribution by global pharmaceutical company Merck & Co. Inc. (known as MSD in the UK). But at Sightsavers we wanted to show another side of the story. After nearly 60 years of working in Africa to alleviate river blindness, we felt it was time to take stock of how NGDOs have performed, and ensure that by looking back, we are heading in the right direction in the future – especially as the scientific evidence shows that we have moved from the control of the disease to the elimination of its transmission.

The paper, ’Empowering communities in combating blindness and the role of NGOs’, reviews published literature and previously unpublished documents relating to approaches to river blindness in Africa during the early 1990s. Through four case studies, it describes the challenges organisations have faced when trying to encourage affected communities to manage their own treatment programmes. This was the only way those trying to tackle river blindness felt ongoing action could be sustained for 20 years or more – eventually leading to elimination.

In Mali, Sightsavers piloted community-based treatment as early as 1991. At first, community members simply assisted on distribution days, but their ‘authority’ grew as they began to manage distribution. The development met resistance from some, who raised doubts about drug safety in the hands of volunteers, and warned that solid data could not be recorded for programme evaluation. These concerns were proved to be wrong and the community model was shown to provide a sustainable solution to controlling and now eliminating the disease in Africa. River blindness is no longer a public health problem in Mali, and with Sightsavers’ support, Community Directed Distributors (CDD) also now deliver treatments for other NTDs, such as trachoma and lymphatic filariasis.

Nigeria’s implementation of CDTI was in response to a different challenge. In 1990, nearly 30 million Nigerians needed treatment for river blindness, but health workers trying to distribute Mectizan® faced serious hurdles. The timing of their visits clashed with working hours and villagers distrusted their intentions. A country director of an NGDO suggested: “Many communities associated the treatment with birth control.” This was of course wrong and the stress needed on community sensitisation around the disease became apparent. But after 1991, with support from Sightsavers and other partners, a community-based strategy was established, evolving into CDTI by 1997. The results? Treatments increased from about six million in 1996 to 27.4 million by 2010. And the approach was extended to other NTDs here too.

Cameroon’s journey to becoming an area where CDTI is now a flagship programme was tough for different reasons. In 1997, 3.5 million people were considered at risk, but communities were negative about mass treatment after years of painful, routine skin-snipping during research programmes. After a mobile team approach, NGDOs began to use community-based strategies, but these were hampered by two particular issues. Firstly, the government insisted on cost recovery, but people were unwilling to pay for preventative drugs when they felt well. Eventually the government allowed ivermectin to be distributed for free. NGDOs were instrumental in this achievement, but the strategy faced a second setback. As mass treatments began, patients already infected reported severe adverse reactions because of a co-infection with another disease Loa Loa. It was only through enhanced treatment supervision using trained health staff that the CDTI programmes could continue and ensure that adverse reactions were treated. But it succeeded, and the model is now also used for activities such as home malaria treatment and bed net distribution.

Finally, in Uganda, the community involvement model was embraced easily and helped establish an internationally-recognised model for eye care. Community members were involved in managing distribution from the early 1990s, aided at a local level by ministries of health and supported by Sightsavers. The success of the network led to Uganda becoming one of the first countries to develop an integrated package for NTDs control.

These examples show how NGDOs’ work with community members was vital in the implementation and scaling-up of ivermectin distribution programmes. It is astounding that we can now acknowledge the CDTI model, along with sustained international support for the control and now elimination strategies, as being responsible for the near-elimination of onchocerciasis in some areas, such as Nigeria.

With the potential for elimination of the transmission of the disease in our grasp, Sightsavers is committed to continuing our support to this programme. Earlier this year we pledged to eliminate the infection and transmission of river blindness in all the countries we support by 2021. It only costs 7p (11 cents) for Sightsavers to prevent someone losing their sight from river blindness for a year when community distributors are used – that’s a tiny price for an incredible result. And as the paper demonstrates, with CDTI, river blindness is not the only NTD we can take on. This has certainly been a story worth telling.

*’Mectizan’® (ivermectin) is not licensed for use in the UK.

Simon Bush is the Director of Neglected Tropical Diseases at Sightsavers, an international NGO helping people with visual impairments in developing countries.  Simon’s work includes travelling to monitor Sightsavers projects, advocating for changes to policy from top decision makers, and developing approaches to social inclusion and inclusive education for the blind and people with disabilities. He also has the important task of managing the relationships with Sightsavers’ public-private partnerships that concern Sightsavers work with potentially blinding neglected tropical diseases (NTDs), such as trachoma and onchoceriasis.