Researchers: See the people behind the numbers

NTD programmes need to focus on people, not just count disease prevalence, say Sightsavers researchers.

An open letter from Sightsavers calling for a greater focus on the holistic needs of people with disabilities arising from neglected tropical diseases (NTDs) has been published in the Lancet Global Health.

The letter, written by researchers from Sightsavers and the Liverpool School of Tropical Medicine (LSTM), says that people living with chronic morbidity or disability as a result of lymphatic filariasis (LF) are at risk of being made invisible by the current focus on research which counts the numbers of people who currently have the disease as the sole focus of elimination.

Instead, the researchers call for an equal focus on what people living with LF need in terms of services and social protection. Many of them will have experienced stigma, isolation and economic hardship, and will have long-term health needs which will still need care once the disease has been eliminated through mass drug administration.

In the letter, the authors write that:

“Data drawn from patient experiences should be given the same weight as projections of the disease’s distribution in decision making toward disease elimination… We must avoid making the same mistakes in neglecting to adequately consider the provision of holistic support for persons affected.”

The letter is also a powerful call to strengthen the care and treatment provided to people with other NTDs by collaborating with other programmes, mental health services, and disability and inclusion programmes.

Sightsavers, in partnership with LSTM, are currently conducting research in Nigeria in partnership with people affected by LF to help understand their lived experiences and make recommendations to improve the design of programmes to better meet their needs. A pilot study is also being carried out to address knowledge gaps around how best to detect and refer skin NTD cases at the community level.

The key findings from this work will be presented at several NTD conferences, including the global symposium on Health Systems Research and the annual meetings of the Coalition for Operational Research on Neglected Tropical Diseases and the American Society of Tropical Medicine and Hygiene. They have also been shared by the World Health Organization in a recent webinar on disability, stigma and mental health.

LSTM is also working to tackle these issues in Liberia through the REDRESS programme, which will evaluate, develop and adapt health systems interventions for the management of severe stigmatising skin diseases. The four-year programme has a specific focus on mental health, disability inclusion and gender-transformative approaches to ensure no-one is left behind.