Bring-it-on Africa

After months of planning, thousands of emails and many hours via Skype we finally met in Durban, the continent of Africa uniting to talk about the issues concerning CML treatment and monitoring. In Africa we constantly receive updates on the wonderful diagnostic measures, the available treatments that prolong and provide quality of life and the protocol s that are used to monitor and manage CML patients. We are always excited to hear about the progress being made however very few patients ever get to experience any of these advances. It is a sad truth that most African countries still only have basic healthcare and that patients are being left behind due to lack of diagnostic equipment not even to mention the struggle to receive a first line TKI let alone second line.
However desperate the situation might be one should not underestimate the power of the human spirit as physicians and patient group leaders attended a one day workshop on November 20th not only to address problems but also to find solutions. It was a fantastic interactive scientific session that allowed everyone to participate and provide opinions. Professor Ndom from Cameroon, Professor Patel from South Africa and Dr Mauro from the US acted as co-chairs and Pat was the moderator. The program addressed the; Basic signs and symptoms of CML. Diagnostics and referral systems. Treatment management and monitoring of patients on Imatinib. Second generation TKI’s and a Free flow group discussion . The information shared in the sessions were invaluable and for this reason a medical writer attended the meeting to assist with the first draft of a paper on the treatment protocols of CML in Africa ,we believe this to be a huge achievement that will not only empower physicians and patients but also present possible solutions for our unique situations.
A busy week it was indeed as the following day patient group leaders attended a full day patient advocacy training session presented by AORTIC. Not only could they share their own experience but also learn from other advocacy groups.
On Friday 22 November CMLSA, the South African patient group hosted a patient group meeting attended by 30 local patients and the patient group leaders representing 10 African countries. Experiences were shared and the communality found and once again the realization that CML does not discriminate between race, religion, age ,sex, economic position or country it affects people across the globe and some have options and others don’t. We need to use what we have and make the best of it and mobilize campaigns and efforts to obtain a minimum standard of quality care.
Following the touching patient group meeting the CML Life Africa group met to plan the way forward for the group and the patient groups represented. Bahija, from Moroco, shared a presentation on the importance of information and communication and Ferdinand, from Kenya, shared a case study to highlight the essence of project management and planning. Trevor, South Africa, shared the best practices involved in the initial set-up, registration and management of a patient group.
Following the presentations we shared a practical session in establishing our work ethos and goals moving forward.
The blog summarizes the events however it cannot grasp the enthusiasm, encouragement and strength drawn from these meetings. Well done African and looking forward to see you bring-it-on!

Leave a Reply

Your email address will not be published. Required fields are marked *