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NTDs and disability: time for new thinking

Helen Hamilton, October 2014
Close up photo of an older woman.

“For the neglected tropical disease response to be truly effective, we need to scale up all activities including prevention, treatment, care and support for all those who need it”

I recently attended the NNN (NTD (neglected tropical disease) NGDO (non-governmental development organisation) network) annual meeting, taking place this year in Paris.

One of the hot topics at the meeting was morbidity management and disability – an issue of huge importance for the NTD community and something that hasn’t always received the focus and prominence it deserves. What really struck me was how ill-equipped we are as a community to address prevention, treatment and rehabilitation and care for NTDs in both an inclusive and comprehensive way.

So why do we in the NTD community find it so difficult to talk about prevention of NTD infections and impairments alongside care of people with chronic conditions and impairments due to NTDs?

NTDs and disability

Traditionally there has been a gulf between the intersection of NTD prevention and the disability caused by NTDs and the care and management of these disabilities. This gulf has been aggravated by tensions between the disability and health sectors. It’s a strain that much of the health sector remains unaware of – mainly due to a lack of nuanced understanding of disability.

There are direct links between NTDs and disability: For example, if people with disabilities are not included in all aspects of the NTD response, our 2020 targets for both elimination and disease management will not be met. Yet, to achieve these targets the health sector and in particular the NTD sector needs to work in partnership with the disability community.

An inclusive approach to scale-up

For the NTDs response to be truly effective, we need to scale up all activities including prevention, treatment, care and support for all those who need it. Too often, the health and wellbeing of people with disabilities due to NTDs have not been considered part of the main NTD response. For example, a major barrier to accessing treatment and care for NTDs such as leprosy is stigma – leading to ostracism from the community and health services.

Collaboration between the health and disability agendas

The NTD community has an important role to play here. Collaboration between the health and disability agendas is vital – not only to ensure NTD efforts are disability inclusive, but moreover that they do not further stigmatise people living with impairments caused by NTDs.

A social model of disability

We need to implement all components of the NTD response through the lens of a social model of disability; recognising that disability is caused by the way society is structured, rather than by a person’s impairment or difference. From this perspective we must look at ways of removing physical and attitudinal barriers that limit choice, control and inclusion for people with disabilities.

The right to health

The main challenge here is that prevention and treatment efforts have not always worked hand in hand with efforts to address stigma and discrimination and provide inclusive services to people with disabilities due to NTDs. This can mean that within NTD prevention and treatment efforts, the right to health of people with disabilities is not always upheld.

Health and inclusion

The right to health is the main point here: Health care, including access to comprehensive NTD services is a right guaranteed for everyone including people with disabilities. To achieve this we need to work more closely with the global disability community to ensure that NTD services and other health interventions are disability inclusive.

This doesn’t mean that we should in any way stop trying to prevent ill health or impairments due to NTDs – after all, if you acquire a disability due to NTDs it means that your fundamental right to health (in this case access to preventive and treatment services) is not being upheld in the first place!

It does however mean that partners in the health and disability sectors need to work more closely together to achieve the 2020 NTD targets in a way that prioritises inclusion.

A step in the right direction

Upholding the right to health provides both the health and disability sectors with common ground from which to recognise each other’s role and move a shared agenda forward. Agreeing a common language and purpose is just the first step – but it’s an important one.

By Helen Hamilton, Policy Adviser at Sightsavers.

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