You might have heard me say that many times. We were close to moving from Africa and Latin America to Asia for a long time. Due to various issues it took much longer than expected. But before I provide more details on that I’ll give you a brief overview.
A long time ago in a congress far, far away
A few years ago former SIOP President Eric Bouffet and South African Paediatric Oncologist Jennifer Geel had an idea of mapping all the facilities in the world, yes in the world, that treat children with cancer. This was to find out exactly what was going on and what was the level of care children with cancer were receiving. The ultimate goal was to produce a map that patients and parents as well as childhood cancer professionals could use to find their closest facility. This wasn’t research for the sake of research but to aid advocacy. SIOP Global Mapping was born. Since then there have been papers and presentations on methods, availability of chemotherapy, availability of radiotherapy, care compared to income etc. We have other papers in progress on nursing and rehabilitation. If you think you can use the global mapping data for advocacy purposes please get in touch and we can discuss.
A brief history of SIOP Global Mapping
Phase 1: We surveyed the whole of Africa. This was a detailed survey with over 60 questions. We also surveyed some of Latin America. Thank you to everyone who completed our survey.
Phase 2: Luisa Chantada brought in almost all the rest of Latin America with a smaller number of core questions. Perhaps you recognise the name Chantada? Well it won’t surprise you to hear that she did a fantastic and very difficult job. You might be able to guess where she got her genes from? Actually, I considered it to be impossible task but she did it, and I kept those negative thoughts to myself. Thank you Luisa for all your hard work and all the folks at the childhood cancer centers who gave up their time for the survey.
Phase 2 and a bit: Our Global Mapping partners and supporters–Scott Howard and Jennifer Lowe from Resonance Health have been doing a great job helping us securely store all the data, usable by each institution, and at no charge to SIOP or institution.
Phase 3ish: we started collecting data from Asia. Yes it finally happened.
Phase 4: the diligent Nita Radhakrishnan informed us that the Paediatric Hematology and Oncology (PHO) Chapter of Indian Academy of Paediatrics were about to survey their members about services, so we managed to get our core key questions into their survey.
“Help us Dr Gorostegui, you’re our only hope”
Phase 5: I am very happy to announce we have a Chair of the SIOP Global Mapping Programme. This is Dr Maite Gorostegui, a paediatric oncologist currently working at Pediatric Cancer Center Barcelona, Hospital Sant Joan de Déu. Long gone are the days when I would tweet “We are about to map Asia”, instead I get emails almost on a weekly basis from Maite, our “President”, saying that she had got another country mapped.
Neil at the top of a mountain he had just run up
Maite with a huge bouquet of flowers from a teenager patient from Romania that is doing really well.
Neil and his daughter Anne at the Houses of Parliament after lobbying for tighter tobacco and vaping controls
Maite and Ivan.
Ivan is a patient from Belarus, this case highlights the tremendous inequalities in caring for children with cancer, including across Europe. It is a huge challenge to give access to treatment to every child diagnosed with cancer in the world. It is impossible to be an oncologist and not think globally.
What’s happening now?
These are exciting times. More and more countries are being mapped. Discussions are taking place with so many national associations and institutions. We are now finding more national associations are very interested in the data for their own country, and there are plans to combine the data with information about patient and parent groups. Look out for us at SIOP Ottawa 2023 and at SIOP Africa 2024.
There have been a lot of people helping with the programme, for whom we are very grateful. A few key players not mentioned above are Julia Challinor, Guillermo Chantada, Kathy Pritchard-Jones, Alan Davidson, Laila Hessissen, Rashmi Dalvi and Susanne Wollaert. And a huge thank you to Foundation S, the Sanofi Collective in France, for their continuing support.
If you want to know more please email the chair Maite Gorostegui maite.gorostegui@sjd.es or me Neil Ranasinghe Neil.Ranasinghe@lseg.com
May the force be with you.
Neil Ranasinghe,
SIOP Member.
24 July 2023
