Report of the first Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) Planning Meeting

18th – 20th October 2017
The Tower Hotel, London, United Kingdom

Full Report: IBTA_SSANOC-Report_FINAL 20Mar2018

Executive Summary

THE 2017 Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) planning meeting brought together a range of stakeholders focussing on the care and support of people with brain tumours and their families living south of the Sahara on the African continent. Sub-Saharan Africa comprises the largest land area of the continent with those countries north of the Sahara making up North Africa and part of the League of Arab States. Sub-Saharan Africa consists of 46 countries. In 2016, the population was more than 995 million. Over 1,000 languages are spoken across sub-Saharan Africa. National health systems and healthcare spending vary widely from country to country. Communicable diseases such as HIV/AIDS, lower respiratory tract infections, diarrhoeal diseases and malaria are among the top four killers in sub-Saharan Africa and generally command the main focus of attention in healthcare. Recently, however, there has been an enhanced focus on non-communicable diseases due to the increasing incidence of such illnesses as stroke, asthma, diabetes, coronary heart disease, chronic hepatic and renal diseases, and cancer. Amidst the many substantial challenges facing people in sub-Saharan Africa, brain tumours are low on the ladder of healthcare priorities. Additionally, brain tumours are rare and country-specific hospital and population-based registries, if they exist at all, are incomplete. So the accurate incidence and prevalence of brain tumours is largely unknown.

There is good news

But the good news for the sub-Saharan Africa brain tumour community is the emerging new focus of attention on it which is being led by highly dedicated and pioneering healthcare professionals with a determined and longterm commitment to improve the situation for people whose lives have been touched by this devastating disease. The first-ever S-SANOC planning meeting was a coming together of some of these health professionals, along with brain tumour patient advocates, neuro-oncology nurses, members of neuro-oncology learned societies and other healthcare professionals with the aim of discussing the challenges and potential solutions for caring for people with brain tumours in sub-Saharan Africa. On 18th and 19th October 2017, the IBTA was delighted to welcome 33 participants from 16 countries to the S-SANOC meeting in London, UK. The S-SANOC meeting was run in conjunction with the Zimbabwe Brain Tumour Association (ZBTA), the Society for Neuro-Oncology (SNO), Dr Mark Bernstein (the Greg Wilkins-Barrick Chair in International Surgery, University of Toronto, Canada) and the SNO Wilkins-Barrick Course in Neuro-Oncology. The SNO Wilkins-Barrick Course in Neuro-Oncology was established in 2015 and provides seed funding for neuro-oncology symposia or courses in the developing world. As part of the 2017 round of funding, a specific call for applications from sub-Saharan Africa was made by SNO. During the period of the grant application process, SNO also became aware of the efforts of the IBTA and ZBTA in connection with brain tumour patients and advocacy communities in sub-Saharan Africa and the two organisations’ desire to improve outcomes for brain tumor patients and their families in this part of the world. Recognizing the congruent interests of SNO and the IBTA and ZBTA a decision was made to invite the SNO Wilkins-Barrick applicants and African patient advocates to London to examine the challenges and potential solutions for improving the care of brain tumor patients in sub-Saharan  Africa. In addition, brain tumor patient advocates from Zimbabwe, Cameroon, South Africa and Uganda were given the opportunity to present their perspectives on the current situations for brain tumor patients in their countries. The IBTA also presented on its current work in the international  advocacy and awareness-raising field. In addition, representatives of the following neuro-oncology societies were present at the S-SANOC meeting: the European Association of Neuro-Oncology (EANO), the Indian Society of Neuro-Oncology (ISNO), and the Asian Society of Neuro-Oncology (ASNO). It was further hoped that bringing together key stakeholders from the region would be conducive to the development of a multi-stakeholder African neuro-oncology society that would take a leadership role in coordinating efforts to improve brain tumour patient care.

The challenges

Over the course of the S-SANOC meeting, the following challenges were identified (however, this list is not exhaustive):

  • late and/or incorrect diagnosis or no diagnosis
  • insufficient access to medical care on all levels from primary through to tertiary
  • an acute shortage of healthcare professionals specializing in neuro-oncology
  • a critical shortage of up-to-date and well-functioning medical equipment such as radiotherapy machines
  • lack of specialist pathological expertise (especially in the increasingly-important arena of molecular profiling)
  • systemic weaknesses, eg lack of funding for supporting staff development and educational training, procurement of equipment and facilities; weak management practices; lack of national and pan-sub-Saharan Africa guidelines for the treatment and care of brain tumour patients
  • very few not-for-profit brain tumour patient and caregiver support, information and advocacy organisations. Those which already exist struggle significantly to provide much-needed services and fill gaps in support and information provision.
  • the practice of traditional medicine as the main source of treatment and advice for a large number of patients
  • substantial stigma attached to brain tumours and their symptoms, for example epilepsy, which is perceived by some as “being cursed”, “being possessed”, “being punished for a previous wrong committed”, etc.
  • absence of a pan-sub-Saharan Africa neuro-oncology society
  • the need for comprehensive palliative/supportive care and end-of-life care for brain tumour patients
  • the necessity for all parts of sub-Saharan Africa (east, west, south and central) to collaborate, network and communicate with each other better

Recommendations

In response to the challenges above the following recommendations were made:

1. To organize a neuro-oncology educational course/conference for 2018 in sub-Saharan Africa, to be jointly
funded by:

  • the Society for Neuro-Oncology (SNO) Wilkins-Barrick International Outreach Course Grant in Neuro-Oncology
  • the European Association of Neuro-Oncology (EANO)
  • the International Brain Tumour Alliance (IBTA)
  • other fundraising efforts

This course/conference – which would either be held as part of an already-existing international meeting planned for 2018 or as a stand-alone event – could address some of the challenges listed above and specifically disseminate the latest information on brain tumour treatments and care.

2. To establish a multi-stakeholder sub-Saharan Africa neuro-oncology society. For this, involvement of stakeholders in the region should broadly reflect the cultural and other needs of the brain tumour population within sub-Saharan Africa. Such a society could – provided it functions on a sustainable and relevant basis – help address the challenges listed above and help overcome some of the barriers which negatively affect outcomes for people with brain tumours in sub-Saharan Africa.

3. To involve brain tumour patient advocacy organisations in both the proposed 2018 and any futureannual educational courses/conferences and also involve them in the proposed sub-Saharan Africa neuro-oncology society. Involvement of patient advocates in all aspects of the brain tumour journey is crucial in order that the patient and caregiver perspective is provided throughout.

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