International Childhood Cancer Day: survival isn’t just about science

My Child Matters has kept growing its impact in the past year. “2023 was such an amazing year in terms of achievements”, Isabelle Villadary, who is Head of Foundation S’s Childhood Cancer program. “There are now 28 ongoing national projects in low and middle income countries. We also succeeded in putting in place 13 regional projects meaning projects that are not only implemented in one country but in several countries in a geographical area. We have 10 in Africa, one in Asia and two in Latin America.”

This strong emphasis on low-income countries is rooted in the necessity for private actors to help to close the many gaps that lead to these areas’ very low survival rates of childhood cancer: lack of government resources, lack of public policy securing access to treatment or political arbitration in favor of other health diseases in areas plagued with multiples crises the countries cannot fight all at once.

“Public policies sometimes don’t exist but not because the government doesn't have the will to set a public policy securing access. It's because in low-income countries, resources are limited,” Alejandra Mandez explains. “So the governments need to prioritize where to invest these resources, and there are other diseases where the return on investment is much higher. So people and children are dying because of infectious diseases or respiratory diseases and of course, it's less expensive and more effective to tackle those. That's where we, the non-profit organizations, come in, especially low-income countries where there's this gap, this need. That's the importance of foundations and private corporations who support organizations that are working in low-income settings and providing those super important and crucial services.“

Recognizing all the realms of valuable expertise in the fight against childhood cancer
The My Child Matters expert committee is a key resource in making sure that these specific needs and gaps from the field are identified and recognized so the most appropriate responses are supported and have a chance to be replicated in the areas where they’re the most needed. The committee brings together very different and complementary profiles to elevate the discussions around these deadly diseases.

“In this table, I represent the voice of the children, their parents, their family and of course, childhood cancer survivors, and we are very grateful for Foundation S for including our voice in the discussion,” Alejandra Mendez explains. “I'm happy to say that I don't have any scientific background. I'm a parent. I work with psychosocial services for children in care so our perspectives complement each other.”

This experience allows the program to gain a full awareness of the many sides of the reality of childhood cancer, beyond the medical tragedy or the scientific solutions that can be implemented. “I'm totally aware that my son is a survivor. He's alive because of the research and the development of science that people like Isabelle and other fantastic people from the scientific community are doing but that's not enough,” she adds. “Especially in low-income settings where the development of science is not enough to change lives. We need to secure access to that development. Where I live, in Latin America, hospitals or oncological care units are located in the city. So families need to relocate and pay housing and transportation to the city. That is an economic burden that many times leads them to abandon treatment.”

In order to gather in one place all of the expertise that experts, field practitioners, civil society organizations and families are gaining as they implement My Child Matters projects to fight childhood cancer, Foundation S has launched an Open Data Platform in the last year, where all project leaders that have received support from Foundation S can share their initiatives’ characteristics and results. This platform has already shown how useful it can be for projects around the world to fight their battle and lobby for their cause with better information.

“In 2023, we created pages for new projects and ongoing projects so local organizations that are currently implementing projects can have their own window defining the project, its objectives, the executive summary, testimonies and the expected impact on their target population. The Open Data Platform is a tool for the project leaders to make what they are doing visible,” Isabelle Villadary explains.

“The second key improvement of the platform is that we looked for all the scientific publications that have come out since the beginning of My Child Matters, and there is now a dedicated page that includes 200 scientific publications including close to 40 manuscripts. Sharing knowledge with others is key, because it invites and inspires others to scale up and duplicate projects in other settings.”

One of the projects that’s included on the platform is one that Alejandra Mendez takes part in herself: Home Away from Home by Childhood Cancer International (CCI) and Foundation S. Its goal is to stop children dying of cancer from preventable reasons, such as low treatment adherence, or malnutrition but mostly treatment abandonment.

"The number one reason for treatment abandonment is because families don't have a place to stay in the city. The Home Away from Home program is tackling this massive cause of death,” she says. “It’s giving a safe, comfortable place for families to stay during treatment. CCI and Foundation S have teamed up to support the building of housing facilities in low and middle income countries. I'm convinced that the right way to save more lives is by doing these kinds of things: on the one hand, scientific and medical research and on the other hand, psychosocial services.”

On this International Childhood Cancer Day, Foundation S and CCI are focused on data. “I think the most important challenge would be to create data of the impact that the projects have had: the number of beds provided, meals served, children supported… It's with that data that we can continue working, secure more funding and efforts,” Alejandra Mendez says.

But though the data is key, she never loses track of who she’s doing this for. “Personally, my dream this year is to continue representing the voice of families. I was lucky enough to be on the happy side of the unfairness of the world but I want you to be aware that the key factor that determines the chances of a child to survive cancer is not the diagnosis but the place where he or she lives,” she says.

“I have so many dreams and not only in terms of saving likes but also improving the quality of life. Every day we have more childhood cancer survivors. Life after cancer means a lot of challenges for this growing population of young people who need their health to be secured.“