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New policy brief from a research partnership in South Sudan

Onchocerciasis (‘river blindness’) affects 19.1 million people worldwide, nearly all in Africa, and can lead to permanent blindness. It is now increasingly recognised that onchocerciasis is also associated with high rates of epilepsy. Onchocerciasis-associated epilepsy, OAE, or ‘river epilepsy’, includes nodding syndrome and Nakalanga syndrome, conditions leading to disability and early death. OAE impacts the social and economic development of affected areas and is a serious but neglected global public health challenge.

A research partnership in South Sudan, led by the Ministry of Health in South Sudan, Amref Health Africa and the University of Antwerp, evaluated the effectiveness of a pilot community-based programme in Western Equatoria State in South Sudan to address OAE. Interventions comprised:

  1. biannual community-directed treatment with ivermectin (CDTI)
  2. a ‘Slash and Clear’ vector control method for eliminating blackflies
  3. a community-based epilepsy treatment programme.

The combined interventions were found to be extremely effective, delivering:

  • 2% reduction in epilepsy incidence
  • 99% reduction in blackfly biting rates
  • 90% increase in reported quality of life of people receiving epilepsy treatment and care
  • 15.8% increase in coverage of ivermectin (to 56.6%)

Results demonstrate that OAE is preventable and treatable. However, additional community engagement efforts are still needed to increase ivermectin coverage to 80% of the population, the level required to fully eliminate onchocerciasis. Results are relevant for policymakers and public health actors in South Sudan, and for humanitarian donors and public health actors worldwide concerned with onchocerciasis, epilepsy, nodding syndrome and Nakalanga syndrome, particularly in Africa onchocerciasis endemic areas in sub-Saharan Africa with fragile and weak health systems. Further research is still required to strengthen and inform OAE elimination efforts. Elrha’s Research for Health in Humanitarian Crises programme is funding a follow-on research project in South Sudan.

This policy brief describes the research project, the scale of the challenge of OAE globally and in South Sudan, wider social and economic impacts and results of the intervention, providing policy recommendations and references.

View policy brief

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