On Tuesday 23 February 2021, Patricia Blanc, our President, spoke at the European Parliament as part of the public hearing of the Beating Cancer committee – in order to emphasize the need to define specific measures and a dedicated budget in the European Cancer Plan to better understand and better treat pediatric cancers.
Check out her full speech below:
« Good afternoon and thank you for giving me the opportunity to raise the parents’ voice about pediatric cancer in the European Cancer Plan.
I will make my speech in French [translation follows].
35,000 children and teenagers are diagnosed each year in Europe. More than half will suffer from serious consequences and 6,000 will die.
This is a tsunami for families – it is a scourge of society – and there is an urgent need to Act, to REALLY Act.
This is why I would first like to thankthe members of the Beating Cancer Committee for putting pediatric cancers among the priorities of the first European Cancer Plan.
As the Commission wrote it in its report, “the European Union can and should do more to protect our children from cancer“.
As a mother who lost her 14-year old daughter from a brain tumor, as the founding president of the Imagine for Margo association and an active member of the European Childhood Cancer International-Europenetwork, I can only strongly approve this observation.
The planned launch, in 2021, of an initiative dedicated to pediatric cancers is also a tremendous hope given to thousands of families in Europe.
Understanding pediatric cancers, and accessing innovative treatments to heal more and better children and teenagers: these are the 2 priorities that I would like to talk to you about today.
These priorities reflect the two terrible questions that thousands of families ask themselves every year in Europe:
- Why does my child have cancer?
- Are you going to be able to cure my child?
When I asked my daughter’s doctor the first question: why does Margaux have a brain tumor? He replied: We don’t know. It’s luck, it’s bad luck …
The only thing we know is that 10% of pediatric cancers are genetic.
In 90% of cases we do not know why a child has cancer.
Children don’t drink alcohol, they don’t smoke –
We must therefore have a specific approach to understanding childhood cancer.
Better understanding will serve to prevent.
Understanding better will also help heal better and heal more.
Understand why some treatments work in adults and not in children. Why some children recover and others don’t.
There is still a whole universe to explore, the results of which will have a major impact in changing the lives of thousands of families in Europe and in saving lives.
Precision medicine has recently developedfor children and teenagers with relapse or treatment failure;
In the past four years, molecular sequencingof childhood and adolescent tumors has taken place, and more than 2,500 patients in Europe have benefited from it.
There are also new early phase clinical trialsaimed at offering innovative therapies.
These sequencing and clinical trials have generated a great deal of in-depth genomic data and clinical data.
The major challenge now is to manage to aggregate and analyze all of these European data in order to speed up fundamental research and the development of new drugs.
Today there are many obstacles in governance, structure, budget. Europe has a major role in helping to overcome them in a comprehensive European approach.
While this research is progressing – very strongly supported by patient associations -, this research is not going fast enough.
We need a real boost, a strong acceleration, of the opportunity offered by this European Cancer Plan in order to understand pediatric cancers, make discoveries and better target treatments.
But understanding is not enough if you don’t have the drugs.
This is my second point: access to innovation.
When I asked my daughter’s doctor the second question: are you going to be able to cure Margaux? The answer was: we don’t know how to cure your daughter.
The only possible treatment was a 40-year old chemotherapy treatment developed for adults. No clinical trial, no innovative treatment for an incurable tumor.
This is also where enormous progress must be made: access to new, better adapted and more effective treatments.
There is such innovation in adults. Thousands of new molecules. Let’s not forget the children.
Only 10% of children in Europe have access to innovation.
The Cancer Plan and the Cancer Mission offer several instruments and initiatives to develop precision medicine, to accelerate access to innovation, to share and analyze data, in particular through artificial intelligence.
These are strong measures and opportunities and children should not be forgotten.
Let us mobilize industry to develop treatments for pediatric cancers: it is planned to review European regulations in this direction. But how much longer will it take?
Let’s speed up authorizations for new treatments. Let’s simplify administrative processes.
Let’s find ways to innovate and save time.
The COVID experience has shown that in the event of a health crisis, we can act quickly, prioritize the development of new treatments, analyze the data, speed up authorizations.
At the level of Europe or the Member States, we know how to do it, it has been proven.
So let’s use these new possibilities to face the urgent need to cure pediatriccancers, the leading cause of death from illness in children over one year of age in Europe.
Let us act so that children and teenagers are quickly put at the top of the European agenda.
Help us make it happen!
Patricia Blanc, Founding President of Imagine for Margo