Disease management, disability and inclusion

patient with hand amputation

The NGO NTDs Network (NNN) cross-cutting working group on Disease Management and Disability Inclusion (DMDI) provides a unique and growing platform for engagement, shared learning, coordination, capacity development and advocacy for interested stakeholders. In this context, systematically coordinating and collaborating with the WHO NTDs-, Mental Health-, and related departments and initiatives is essential to achieve our common goals.

The DMDI approach

Neglected Tropical Diseases (NTDs) lead to significant morbidity and chronic disability and trap individuals, their families and communities in a cycle of poverty. Their combined Disability Adjusted Life Years (DALYs) equal those of Malaria, TB or HIV/AIDS, and there is considerable evidence that they are significantly underestimated when other consequences, such as stigma and mental wellbeing, are taken into account.

In addition to the crucial WHO-led global efforts in prevention and elimination, NTDs thus have distinct public health and patient care dimensions for those already affected. However, systematic consideration of “Disease Management, Disability and Inclusion” (DMDI) is lacking or relatively weak in most NTD programmes. Unfortunately, so far only a few NTDs, such as trachoma, LF and leprosy, have formally included the provision of basic care for individuals affected into their elimination goals.

DMDI recognizes and underpins WHO's promotion of NTDs as a proxy for poverty, marginalization and inequity under the WHO Road Map, the Sustainable Development Goals (SDGs) and Universal Health Coverage (UHC). The DMDI concept includes and actively supports Morbidity Management and Disability Prevention (MMDP) as one important component of the comprehensive “continuum of care” required by many persons affected by NTDs.

The DMDI approach promotes equitable and inclusive quality patient care reflecting the cross-cutting features of NTDs. DMDI may be defined as “an approach that encompasses the medical treatment of NTD complications, the prevention and (self-)management of disabilities, promotion of mental wellbeing, reduction of stigma and promotion of other interventions and approaches that facilitate inclusion in society, such as human rights, the participation of affected persons and communities, and livelihood”.

DMDI Objectives

  1. To promote a comprehensive continuum of care based on a social disability model, and position NTDs within the wider field of disability.
  2. To identify cross-cutting issues and interventions relevant across NTDs and develop strategies, tools, and technical and programmatic resources for capacity development of NTD programmes.
  3. To identify opportunities for information sharing and cross-learning between NTD actors, and facilitate access to up-to-date information regarding research findings, developments and innovations in NTD-related disability.
  4. To promote and facilitate implementation research on patient-centred intensive disease management, disability prevention, mental wellbeing, stigma reduction, the participation of affected individuals and communities, inclusion and human rights.