PATIENT ADVOCACY-01 WHY IS NEURO- ONCOLOGY MISSING FROM CIVIL SOCIETY CANCER ADVOCACY AGENDA?

BACKGROUND: Cancer civil society and patient groups across Africa play a major role in pressuring governments to develop, fund, and implement national cancer control plans and to keep their commitments to international declarations. Additionally, community cancer awareness is mainly driven by lay cancer advocates and cancer survivors. The cancer policy and legislation landscape in Kenya has largely been shaped by the civil society through consistent advocacy OBJECTIVE: Explore barriers and enablers to meaningful engagement of cancer civil society advocates in advancing neuro-oncology in Africa. METHODOLOGY: This is a desk review of current developments and literature in advocacy for neuro-oncology with insights and perspectives of practicing oncology nurses and civil society cancer advocates in Kenya. FINDINGS: Cancer advocacy in Kenya has traditionally focused on creating awareness on the more common cancers, breast, cervical prostate and Gastro-intestinal cancers. Over the last 10 years’ attention has gradually shifted to access and cost of care. Cancers of the central nervous system such as gliomas, neuroblastomas and meningiomas, though not uncommon do not feature prominently in advocacy discourses. This is due the fact that they are perceived as ‘rare’, complex, difficult to explain and with poor outcomes. DISCUSSION AND IMPLICATIONS: There is a growing appreciation of the need to develop a framework through which civil society can contribute to the development of quality neuro oncology services. Cancer civil society organizations, neurosurgeons, neurologists, oncologists, academicians, and other healthcare professionals must work together to overcome structural barriers so that neuro oncology is not left behind in the national cancer plans. Stakeholders will need to establish guidelines with well defined mechanism for engaging, involving and acknowledging the contribution of cancer advocates in advancing neuro-oncology. This will require a cultural shift from neuro-oncology professionals to accommodate the input of lay civil society advocates.