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A Patient Advocate’s perspective: Society for Neuro-Oncology Sub-Saharan Africa inaugural meeting

By IBTA News, SNOSSA

In the second in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, nurse and brain tumour patient advocate Derick Agbor gives his reflections on the event:

Jacob's Hope Foundation logoThe first SNOSSA meeting was an event that brought great minds together to ponder on the achievements made so far and the way forward for brain tumour care. Improving the quality of care while equally advocating for people suffering from brain tumours/cancer was a key note of this meeting.

The first day of the SNOSSA conference was marked by presentations of different diagnostic and therapeutic procedures of gliomas. A high rate of success in diagnosing and treating these conditions was demonstrated by all the speakers, thanks to advanced techniques they employ. Notwithstanding, numerous situations still exist that make it difficult for patients to be diagnosed early and to access care.

Deliberating the challenges faced by brain tumour patients in Sub-Saharan Africa

Time and energy were focused on deliberating the challenges faced by brain tumour and cancer patients in various countries of Sub-Saharan Africa, whose cases often go unnoticed or are misdiagnosed. So many reasons were put forward by delegates, amongst which is the lack of knowledge about brain tumours and different types of cancer in sub-Saharan Africa communities

Poor health policies in some countries are making it difficult for people to access care, due to monopolies and bottlenecks. Moreover, in some countries there are very few publications that address brain tumours/cancers, which are a means by which individuals can enrich their knowledge on brain tumours. To some extent, advanced technology for the handling of cases is absent in many countries and even when it is available, paying for equipment maintenance is an ongoing issue. Financial difficulties are a key reason for these problems and very few citizens can afford this advanced care. This is a major reason why referred patients always can end up not going to treatment centers to receive care.

It was felt that individuals’ belief systems are equally a barrier to care, since many people will prefer traditional therapy or visit ‘men of God’ because they believe that brain tumours have a spiritual origin. Most importantly, there is always the tendency in the majority of cases for health care providers at the peripheral level to misinterpret the diagnosis of a brain tumour. This is seen in the numerous patients who visit many health facilities with their brain tumour going undiagnosed.

Attendees to the first SNOSSA meeting

Deliberations continued into the second day, which explored bridging the gap that keeps people away from care. Some major conclusions were made. These included making efforts to intensify communication in the community through social media and all avenues necessary. Getting stakeholders in brain tumour care to be part of this sensitisation movement may go a long way to bring an end to the bottlenecks that exist. It was felt that learning from brain tumour advocacy strategies practiced in other countries would make it easier to develop a model that will work across the region. Furthermore, it was highlighted that a multidisciplinary strategy is very important in the future fight against brain tumours and other cancers.

With the current challenges faced today in brain tumour care in Africa, this meeting was ideal ground for fruitful deliberation on the way forward.

 

The President’s perspective: Society for Neuro-Oncology Sub-Saharan Africa inaugural meeting

By IBTA News, SNOSSA

In the first in a series about neuro-oncology in sub-Saharan Africa, Dr James Balogun, president of SNOSSA, gives his reflections on the new society’s first formal meeting.

Dr James Balogun, inaugural President of SNOSSA

The first meeting of the Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA) was held at the Transcorp Hilton Hotel, Abuja on 22-23 July, 2018. SNOSSA was borne out of the first Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) planning meeting in London last year (read more here), which was facilitated by the International outreach committee of the Society for Neuro-Oncology (SNO) led by Dr. Gelareh Zadeh, the International Brain Tumour Alliance (IBTA), the Greg-Wilkins Barrick Chair of the Department of Surgery, University of Toronto and the Zimbabwe Brain Tumor Association (ZBTA) with the support of the European Association of Neuro-Oncology (EANO), Indian Society of Neuro-Oncology (ISNO) and the Asian Society of Neuro-Oncology (ASNO).

The meeting was attended by delegates from Sub-Saharan African countries as well as speakers drawn from the United States, United Kingdom, Canada, India and Greece.

There were a variety of sessions throughout the event, covering a range of topics. These included talks that considered the landscape of neuro-oncology in sub-Saharan Africa alongside discussions about gliomas. The highlight of this session was a keynote address by Dr Rakesh Jalali, in which he concisely addressed the WHO 2016 update of brain tumours and the practical recommendations in the clinics – particularly in low-medium income countries. The session ended with a great talk from Dr Evangelia Razis about palliative care for patients with brain tumours, in which she also noted the need for care providers to give psychological support.

The paediatric tumour session was kick-started by the President of the International Society of Pediatric Oncology (SIOP) Dr Eric Bouffet, who gave an exciting talk about the management of medulloblastomas. Discussion centred on adapting the care of medulloblastoma to sub-Saharan Africa and leveraging on the recommendations of SIOP. There were also insightful discussions on the challenge of caring for children with gliomas and craniopharyngiomas.

The second day of the meeting had a thrilling patient advocacy session, which was co-sponsored by the IBTA, with talks about “the physician as a patient advocate”, the challenges of advocacy in Nigeria and Sub-Saharan Africa, and the challenges faced by carers of brain tumour patients. The session brought to the fore the need for collaboration between physicians and patient advocates. the need for increased listening and empathy by providers, and the need to document the available neuro-oncology capacity in sub-Saharan Africa to facilitate access to services.

The event hosted panel discussions that looked at education, research and collaboration within and outside Africa. Chas Haynes, the executive director of the Society for Neuro-Oncology (SNO), explained more about the continuing support of SNO and the development of a resource to document neuro-oncology capacity in sub-Saharan Africa, which will also serve as an educational portal. He read a goodwill message from IBTA co-Director Kathy Oliver.

The meeting ended with a SNOSSA business meeting, where the Society’s Constitution was adopted and an Executive Council - to be led by Dr James Balogun - elected. Two patient advocates were elected to the Executive Council: Bonita Suckling of Rainbows and Smiles in South Africa and Irene Azong-Wara of Jacob’s Hope Foundation in Cameroon. The hosting for the 2019 SNOSSA meeting was awarded to Cape Town, South Africa with Professor Alan Davidson as the conference chair.

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