Empowering Childhood Cancer Survivors: Insights from Joao Braganca
Joao Braganca, board member of Childhood Cancer International (CCI), sheds light on the crucial role of survivors within the organization and outlines their ambitious plans for global advocacy and support.
In an interview with Joao, we delve into the significance of survivors within the organization and the pivotal initiatives aimed at enhancing the quality of life for individuals affected by childhood cancer. Joao shares insights into the challenges, objectives, and strategies of CCI's survivor group, highlighting the importance of collective action in promoting awareness, support, and empowerment worldwide.
Can you elaborate on the significance of survivors within Childhood Cancer International (CCI) and why they are considered a vital group?
The survivors are an important group within CCI. Not only are they a sign of hope for the newly diagnosed, but they are young people with specific needs that must be addressed. We know that probably ⅔ of childhood and adolescent cancer survivors will suffer late-effects of their cancer and its treatment. These late-effects can affect the whole organism and psychosocial wellbeing. In addition, many survivors face socioeconomic discrimination due to their prior illness.
What motivated the decision to establish a global structure for survivors within CCI, and how did the initial meeting in Ottawa contribute to this decision?
This idea has been on the Board agenda for some time. We knew it would be a challenging project, not only because there were some prior unsuccessful experiences, but also because we are talking about a very culturally and geographically diverse group. On the other hand, knowing about the importance of survivors for our cause but also their challenges, we know we had to do something for this specific community. There was an informal meeting of survivors in Ottawa and we decided to take it from there, to profit from their motivation to do something.
Could you outline the main objectives of the survivors group, as stated by the survivors themselves?
The survivors want to share knowledge and experiences, they want to create awareness about their issues and challenges, they need this sense of belonging, and to know that even if you live in the poorest country in the world there is someone out there, in the richest country in the world, sharing similar issues.
Tell us about your role within the survivors group?
My role is mainly a facilitator one. The survivors from the initial group come from very different countries: Nigeria, Hong Kong, Chile, Portugal, India, Costa Rica. They have their own professional lives and are culturally diverse. My role is to facilitate the meetings, from an organizational point of view, but also to promote internal discussions and ways to move forward.
How does CCI plan to facilitate knowledge and resource-sharing among survivors, patients, parents, and healthcare professionals?
CCI is working on a Knowledge Portal where we will put all that information.
In what ways does the survivor group aim to raise awareness about the issues faced by childhood cancer survivorship on a global scale?
There is not an immediate answer to that question. For now, we are organizing 2 webinars for the Survivor’s Week (24th to 30th June) during which we will discuss important topics for the survivors. In fact, the topics were their own choice! However, we are still building a structure because we feel that without a proper structure it will be difficult to do global things. We must start our house with the foundations.
What are some of the challenges and opportunities that the survivors group hopes to address at a global level?
They are different because the needs and challenges vary according to the country / region where each of them lives. But we would say mental health, stigma, communication, sexuality and fertility, entry into professional life, etc. are common themes to every survivor around the world. If there are common themes, why not common campaigns? The more we are, the stronger our voice will be.
How does the survivor group intend to create a sense of belonging and provide peer support and empowerment for its members?
Let’s start from the beginning. Our medium-term objective is to identify a dynamic survivor – a champion – at least in every country where there is a CCI member organisation. We must ensure that in those countries there is also a survivors’ structure and we are here to help create or strengthen these local structures. Then we will move to a regional dimension and finally to a global one. But let’s go local first.
Can you explain how the survivors group aims to enhance the quality of life and care for individuals affected by cancer?
For now, we want to build a structure. Then, as we expand our geographical representation, we will start building global campaigns. An example can be the “right to be forgotten law” that will have an impact on the quality of life of the survivors. It has been successfully introduced in some countries in the world. Why can’t we organize a global awareness campaign? Or the right to have long-term follow-up care?
What strategies does CCI plan to implement to promote an equitable healthcare system for all survivors?
We work in different areas. We partner with SIOP, with WHO and other global players in order to promote better treatment conditions for everyone because we still live in a very unequal world. On the other hand, we help our member organizations, especially in low and middle-income settings, to build capacity. A strong parents / survivors organization can be very powerful and can change many things in their own countries and regions. There are many examples of laws that have been changed due to the initiative of parents or survivors.
Finally, how can individuals interested in contributing to this global network of survivors collaborate with CCI and its member organizations to achieve the medium-term objective of establishing local survivor structures worldwide?
For the time being, we are building a list of “who’s who and where”. Those who are interested in participating can always fill the form we share on our website but can also contact me directly.