Some 35,000 children are diagnosed with cancer every year in the EU.
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00:00 Back in 2016, Fay suddenly started falling ill quite frequently.
00:12 From November to Christmas in December, we pretty literally spent every weekend in the
00:17 hospital.
00:18 After January, after New Year, our girl lost the functionality of her left arm.
00:25 That triggered one of the doctors an alert signal and they took an x-ray of the brain.
00:35 Then they sent the tumor to the lab and five days later they brought us the news that the
00:40 tumor was actually an aggressive type of brain tumor called ATRT, a very rare indication
00:46 which doesn't occur that often at all in children.
00:50 But when you're diagnosed with that malignancy, you know that you don't really have a lot
00:57 of options.
01:02 Fay lived with her parents in Giel, Belgium.
01:06 She was treated with a combination of chemo and radiotherapy.
01:12 Fay passed away some six months after the diagnosis.
01:16 She was just two years old.
01:21 All of these therapies are technologies of let's say the middle of the last century.
01:26 The chemotherapy compounds, they were developed in the 60s of the last century and they're
01:32 used today still to attack these tumors because there's no more precise therapeutic available
01:38 in the clinical world today.
01:42 Fay is not an isolated case.
01:45 Some 35,000 children are diagnosed with cancer every year in the EU.
01:50 Incidents can almost amount to 18 cases of every 100,000 children and young adults.
02:04 Further research, investments and regulatory efforts are thus imperative.
02:08 There's a foundation advocating for more action against cancer in children.
02:14 Delphine Henin is the founder and managing director of Kik Cancer based in Brussels.
02:22 We need to cure certain types of cancer.
02:25 Some patients we know today when they're diagnosed, they will never cure for cancer and yet they
02:31 don't have access to new drugs and there is no ongoing research to look for new drugs
02:38 for those children.
02:39 So we need new drugs to cure certain children with cancer.
02:44 Then many children with cancer will survive and will be cured but the treatments are very
02:51 toxic in the short term so the treatments are very long and very hard.
02:57 It means that young people are taken out of the social life, school and that's very hard
03:04 at a stage in your life where you need to develop.
03:10 The European Commission's pharmaceutical reform wants paediatric studies finalised within
03:14 five years so products reach child patients quicker.
03:21 The EC has also proposed that all new medicines that might be of interest for children are
03:26 indeed screened for their use.
03:39 Simplifying procedures, increasing transparency and enhancing networking between patients,
03:44 families, academics and medicine developers should also help speed up the authorisation
03:49 of medicines for children, the Commission claims.
03:52 Children are not small adults.
03:55 Children need frequently totally different treatments and medicines.
04:00 We have put children and young adults in the spotlight by providing different incentives,
04:06 by rewarding innovation in order to have more research and development.
04:17 For the past year, maybe two years, I'm hearing a lot more positive indications that people
04:22 are really looking for collaboration.
04:23 Public institutions are also aware of their responsibility and if you combine pharma with
04:28 public and you create a structure where they can pool resources and can targetedly look
04:34 at paediatrics, it should be possible.
04:39 It's not sending a rocket to Mars either.
04:41 This is something where you need hundreds of millions but not hundreds of billions of
04:46 euros.
04:47 We are outside of the realm of reality I think to expect that something is going to work
04:53 in the next five to ten years.
04:54 [Music]