Zero Discrimination in MDA - reaching all children with disabilities to beat NTDs
Published for Zero Discrimination Day 1st March 2021 by Theresa Baird& Kirsty Smith CBM UK / CBM Global and Anouk Gouvras GSA, with operational report contribution by Janette Abing-Taga-an CBM Australia
People with disabilities make up 15% of the global population. On average, therefore, one in seven people will have disabilities, potentially more in the poorest communities (Kuper, 2019), and all have the equitable right to be included in Neglected Tropical Disease (NTD) Mass Drug Administration (MDA) programmes.
So why is it that MDAs for diseases like schistosomiasis (SCH) and soil transmitted helminths (STH) do not include all children with disabilities?
Children with disabilities get worms too…right?
The key question is: who gets missed and why? There are several barriers to the inclusion of all children in MDA that is primarily delivered via schools:
- They are not in school or
- They are not in the schools that the State lists for treatment
- They are not physically able to take the tablets.
Barrier 1: They are not in school
Children with disabilities, particularly those with learning disabilities, intellectual impairments and complex needs, are frequently excluded from school. This may be because the child has not been accepted into the local mainstream school, a school that supports their needs is too far away, or because their families do not want to send them to school.
To address this, it is vital for NTD programmes to:
- Seek and identify the children excluded from NTD programmes
- Support parents of children with learning disabilities and other disabilities by connecting them to Organisations for People with Disabilities (OPDs) and local peer support groups
- Advocate for the rights of the child to inclusive education at national and local government level.
Barrier 2: They are not in the schools that the State lists for treatment
So which schools don’t count? In a country-led NTD health programme, the State provides the list of schools for the NTD programmes to reach. If the state only provides a list of state-run schools, privately run schools like religious schools, trade related schools and schools for children with disabilities will be excluded.
This needs to be urgently addressed by:
- Asking the Ministry of Education to provide the full list of all schools, whether state- or privately-run
- Use local contacts, teacher associations and OPDs to identify additional places of education.
Barrier 3: They are not physically able to take tablets
Many children have difficulty taking tablets, and this may be more so with children with disabilities, such as children with developmental or intellectual disabilities who may find it difficult to understand why taking the tablet is important, or children with cerebral palsy who may have difficulty swallowing. This can lead to distress and potential choking, affecting not just young children, but older children, teenagers and adults with disabilities too.
These challenges can be addressed by:
- Training MDA teams in disability inclusive delivery, highlighting sensitivities for particular types of disability (eg: autism and intellectual impairments, deaf, blind etc) and understanding the rights of the child (For more information, see The Convention on the Rights of the Child: The children’s version | UNICEF and childrens-rights-poster.jpg (1000×1599) (edubuzz.org))
- Ensuring trusted and relaxed adults are present and have been able to sensitise the child before the arrival of the MDA team (teachers, teaching assistants or parents if needed)
- Offering more child-friendly versions of the medication to all age children (eg: chewable tablets or oral suspension currently being developed for pre-school children are described below).
In July 2019, CBM and its partner HANDS were running a DFAT funded deworming programme in a school for children with disabilities in Bwari Area Council, Federal Capital Territory in Nigeria. This was the first time the school had been included in such a programme. When Dr Nebe Obiageli, the Head of the National Schistosomiasis and STH Control Programme, witnessed the difficulties that some of the children had in swallowing the tablets, she promised to raise the need for a paediatric oral suspension within the Federal Ministry of Health (FMoH). This vital adaptation was discussed at the NTD NGO Network (NNN) conference in Liverpool in September 2019 with WHO, the Schistosomiasis / STH working group, CBM and the Director of HANDS Mr Chris Ogoshi. This helped elevate its priority need: firstly, to a rights-based approach where children with disabilities have a right to access health services. Secondly, to a community prevalence point of view, whereby children with heavy intensity infections, who have not swallowed the necessary treatment, “will reduce the potential impact of a treatment program and result in persisting infections, thereby increasing the risk of resurgence” (Toor et al, 2020).
Running in parallel, progress has been made with the distribution of chewable tablets for STHs, and the Pediatric Praziquantel Consortium (an international public-private partnership) working on an access program for the child-friendly formulation of praziquantel to treat Schistosomiasis in preschool-aged children. The next step is to make this more widely available to NTD programmes, delivering it to all age children with disabilities in schools across Nigeria and other countries endemic for schistosomiasis and STH.
Impact of these diseases
Infections with schistosomiasis and soil transmitted helminthiasis hampers child development, increasing stunting, wasting and illness; and hinders cognitive development. Children miss out on education through bad health which adversely affects their educational outcomes, damaging their prospects and future opportunities. As the disease progresses, severe outcomes from schistosomiasis, such as liver fibrosis, portal hypertension, internal bleeding through varices, urogenital lesions, infertility, bladder damage and bladder cancer are more likely. Members of the family who are not symptomatic need to stay at home to take care of sick relatives. Genital Schistosomiasis can lead to infertility, painful lesions, increase risk to HIV and other sexually transmitted infections (STIs), or be misdiagnosed as an STI which all increase the risk of stigmatisation and isolation.
Countries are working hard to stop these diseases from developing in children through regular deworming. These are delivered through school-based or community-based programmes and sometimes by a mix of the two.
The new WHO NTD road map 2021-2030 has set the global target for all schistosomiasis endemic countries and for 96% of STH endemic countries of ‘elimination as a public health problem’ by 2030.
Socio-economic benefits of tackling these diseases
A report by the Economist Intelligence Unit and The END Fund highlights the astounding economic gains of meeting the WHO targets for schistosomiasis and STH. Meeting these targets in Ethiopia, Kenya, Rwanda and Zimbabwe by 2030 could boost these countries’ GDP by US$ 5.1 billion (bn) in purchasing power parity (PPP) by 2040. And if these 4 countries eliminate schistosomiasis and STHs, their children's earning potential would increase by US$1.2bn (PPP) once they enter the workforce. It is thought that similar socio-economic benefits would be gained by all countries affected by these diseases, but in order to achieve these goals, we must ensure no one is left behind and everyone has fair and equitable access to health facilities including deworming treatments.
The task in hand
Delivering school-based MDA for schistosomiasis and STH requires a high level of mobilisation and organisation to reach government and privately run schools. It must continue to ensure children with disabilities are not excluded from future NTD programmes by breaking down the barriers identified.
Because ALL Children and ALL Schools COUNT.