Neglected Tropical Diseases and Disability - What is the Link?
On 24th July, governments, technology companies, researchers and charities convened in London for the first ever Global Disability Summit. The summit is part of the UK Government's commitment to support approaches to tackle the discrimination and neglected faced by many of the 1 billion people living with a disability.
This commitment follows the UK’s support to the control and elimination of neglected tropical diseases. Professor Hannah Kuper, Director of the International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine assesses the relationship between NTDs and disability and asks how best these two commitments can be met.
What is disability, and why is it important?
There are many different ways of defining disability. Essentially, people who are disabled have an underlying impairment (such as difficulties in hearing, understanding or seeing), which together with different barriers (e.g. negative attitudes, physical inaccessibility) stops them participating fully in society. As a consequence, people with disabilities are being left behind in terms of levels of schooling, employment, poverty and so on. This is important on a global level, as there are an estimated 1 billion people with disabilities, equating to 15% of people worldwide.
Can NTDs be disabling?
There are many parallels between NTDs and disability. Both affect approximately one billion people. Both are more common in the poorest parts of the world, and among the poorest people. There is also a direct link as NTDs are frequently disabling. Almost all of the 17 main NTDs can cause disabilities. As examples, trachoma and onchocerciasis can cause blindness; leprosy, chikuyngunya, yaws, lymphatic filiarisis, and Buruli ulcer can lead to physical impairments; Chagas disease and African trypanosomiasis cause a range of disabling outcomes.
NTDs can also lead to disabilities indirectly. For instance, soil-transmitted helminths and schistosomiasis can cause delayed physical and mental development of affected children, predisposing them to disabilities.
People with NTDs also often face stigmatising attitudes and social exclusion, which leads to high levels of mental ill health. Even in the absence of vision loss, trachomatous trichiasis can reduce quality of life and participation in activities of daily living because of the pain and discomfort that it causes. The reason for the global attention on NTDs is actually because of their disabling effects, as few are directly linked to mortality.
Since NTDs can cause disabilities, there is a good argument for integrating rehabilitation within NTD programmes in order to improve the quality of life of people affected. Rehabilitation can be defined in a narrow medical sense, such as provision of physiotherapy or assistive devices. It can also be conceptualised more broadly, including programmes to overcome stigma and discrimination, improve employment opportunities, and provide social assistance. Incorporating this focus in NTDs programmes is also important since disability, poor mental health, shame and stigma can reduce help-seeking and treatment adherence, and so make it more difficult for NTD goals to be achieved.
Currently, integration of rehabilitation within NTDs programmes is lacking. The focus on NTD programmes is mostly to prevent and treat, in the belief that if these are effective then rehabilitation won’t be needed. However, in today’s world not all cases of NTDs can be avoided, and many people are already disabled as a result of NTDs. This means that incorporating rehabilitation into NTD programmes is still needed. Two steps are required to achieve this goal. Firstly, the rehabilitation needs of people with disabling NTDs must be assessed, both in terms of medical and broader needs. Secondly, NTD programmes need to be expanded to incorporate provision of rehabilitation, or to link to existing rehabilitation services. As an example, Lepra, a leprosy focused charity, offer programmes which focus both on the diagnosis and treatment of leprosy but also on tackling stigma and discrimination and providing means to improve livelihoods.
Is it important to consider people with disabilities when designing NTD programmes?
On average, people with disabilities will make up 15% of the population, and so 15% of participants of mass drug administration and other NTD control programmes. This proportion may be even higher, as both NTDs and disabilities disproportionately affect poor people. If people with disabilities are not included in programmes then the global targets for elimination and management of NTDs will not be met.
People with disabilities may find it more difficult to engage in NTD control programmes for a variety of reasons. For instance, trachoma or schistosomiasis programmes may operate mass drug administration through schools. However, children with disabilities are often excluded from schools, and so will not receive the treatment. Or messaging about prevention of NTDs may be transmitted by radio, which will not reach people who can’t hear. Steps are therefore needed to ensure that NTD programmes are inclusive. This may require tackling physical barriers (e.g. ensuring treatment distribution points are accessible), providing communications in a range of formats (e.g. visual, radio), and including images of people with disabilities in campaign pictures to highlight that the programme is for everyone. It is vital to include people with disabilities in the planning, and potentially delivery, of NTD programmes, to ensure that they are set up to be accessible for all. Monitoring inclusion is also important, to check whether these efforts are working. As an example, Sightsavers has monitored whether people with disabilities are included in their trachoma trichiasis camps and mass drug administration work within its NTD programme in Tanzania.
Leaving no-one behind
Disability and NTDs are intertwined. Expanding the focus of NTD programmes to integrate rehabilitation will help improve the quality of life of people living with NTDs. Ensuring that NTD programmes are inclusive of people with disabilities will mean that a greater proportion of the population is reached, and NTD targets are more likely to be met. Harnessing the current momentum behind both disability and NTDs will make both sectors stronger, and help make sure that 'no-one is left behind' as we move towards NTD control.