20 February 2019
Caring & Living As Neighbours / Atfaal Welfare Society / Kakamega Children’s Library
CLAN’s commitment focused on specific efforts in partnership with NCD Child, Kakamega Children’s Library in Kenya and the National Institute of Child Health (NICH) in Pakistan to share CLAN’s strategic framework for action as a model for driving sustainable, scalable change for children living with NCDs in LMICs.
Achievements are presented relating to CLAN’s five pillars:
1) Access to medicines and equipment – worked with NCD Child to establish the NCD Child Task Force on Essential Medicines & Equipment. CLAN’s President, Dr Kate Armstrong was the Inaugural Chair of this Task Force, which was launched at the 2017 World Health Assembly in Geneva. The EME TF will focus on collaborative, global efforts to improve access to medicines for all children living with NCDs and work with WHO to streamline processes for updating Essential Medicines Lists for Children affected by NCDs.
2) Education, Research and Advocacy – collaboration with partners in Kenya to translate and adapt CLAN’s Child-Friendly Rights Flyer to support children living with Rheumatic Heart Disease in Kenya. The flyer was translated into Swahili and shared amongst the RHD Community in Kenya. CLAN’s flyers were formally launched on 20 February 2017 at the WHO Seminar on NCDs and Human Rights in Geneva.
3) Optimisation of medical management (holistic approach, with a focus on primary, secondary and tertiary prevention) – worked with partners at NICH in Pakistan to complete a two year project promoting better health outcomes for children living with Congenital Adrenal Hyperplasia (CAH) in Pakistan. Key achievements included: collaboration with private sector; establishment of a national online CAH register for use by all paediatric endocrinologists in Pakistan; development of a novel mobile phone app to support health professionals, families and young people living with CAH to better manage CAH; translation of educational resources into Urdu; formal sign off by government to commence newborn screening for Congenital Hypothyroidism
4) Encouragement of family support groups – support for conduct of CAH, Osteogenesis Imperfecta and Polio support group meetings in Pakistan; and RHD Club meetings in Kenya. Attendance by President of Kenyan Multiple Sclerosis Club to attend WHO NCD meeting in Uruguay.
5) Reduce financial burdens and promote financial independence – support for strong messaging at all NCD Club meetings of importance of children attending school; advocacy for Universal Health Coverage
Key lessons learned:
– CLAN’s strategic framework for action provides a useful model for collaborative action to help children:
1) survive – action to improve access to medicines
2) Thrive – efforts to implement newborn screening for Congenital Hypothyroidism will end preventable disability for thousands of babies in Pakistan each year and
3) Transform – empowering young people living with NCDs to understand their basic rights to health and life sets them on a course to drive chance locally for themselves.
– partnerships across sectors are imperative
– person and community-centred approach promotes collaboration and unity
In support of the Global Strategy (2016-2030), CLAN (Caring & Living As Neighbours), the Atfaal Welfare Society of Pakistan, and the Kakamega Children’s Library in Kenya commit to collaborative efforts to improve quality of life for children and adolescents living with and at risk of non-communicable diseases (NCDs) in resource-poor communities. CLAN’s strategic framework for action will be utilised by all partners in this commitment to promote a rights-based, community development and person-centred approach to reducing global inequities for children living with chronic health conditions in low- and middle-income countries in Africa and South East Asia. In particular, CLAN will support Atfaal’s efforts to strengthen the Congenital Adrenal Hyperplasia and Osteogenesis Imperfecta communities in Pakistan, and the Kakamega Children’s Library’s efforts to support the Rheumatic Heart Disease community in Kenya.
We commit USD $100,000 to multi-sectoral engagement and capacity building to drive sustainable, scalable change. Our partnerships will maintain communities of children and families as the visual hub of collaborative action and will focus on CLAN’s five pillars: (1) affordable access to essential medicines and equipment; (2) education, research and advocacy; (3) optimization of medical management; (4) encouragement of family support groups; (5) and promoting financial independence to improve quality of life for children living with NCDs in Pakistan and Kenya.
Progress on this commitment has been excellent and success has been achieved with thanks to collaborative support from a broad range of passionate partners. CLAN’s 5 pillar model has provided a useful framework to guide planning, implementation and monitoring of multisectoral activities, and maintained a collective focus on the children and adolescents who are affected by – and at risk of – NCDs in resource poor settings.