The ICR says that the EU's scheme of class waivers for cancer drugs should be abolished because it lets companies restrict who their cancer treatments can be used on and too many companies won't test their drugs on children. The ICR says this means there are plenty of cancer treatments out there that could be used on children but can't be routinely prescribed because of the class waiver and children are dying as a result.
Around 1,600 children are diagnosed with cancer each year and about 260 of those die, some of them unnecessarily because of these class waiver rules. About 331,000 adults are diagnosed with cancer every year and that's where the money is for the drug companies. Testing on children is not only expensive but a clinical trial that results in the deaths of children is hugely damaging reputationally. The drug companies are given exclusivity on their treatments if they test them on children but that obviously isn't enough of an incentive so the answer is either to offer better incentives or punish them for not testing on children. They make so much money that punishment is unlikely to work and at the end of the day we can't do without the product they're selling so more incentives are probably the best option. What form those incentives might take I don't know but if we want to cut the caner death rate in children someone needs to come up with something fairly rapidly.
Of course, the blame for poor access to some cancer drugs can't be laid entirely at the drug companies' feet because the National Institute for Clinical Excellence (laughably abbreviated NICE) has a poor record of investing in life threatening or changing treatments in England. It is because of NICE's penny pinching that we can't get some cancer treatments that are routinely prescribed abroad and even elsewhere in the UK. It's because of NICE that elderly people in England go blind when their sight can be saved because the cancer drug that cures the most common cause of blindness in old people is too expensive for English people. The drug companies absolutely need to be taken to task for not making their drugs available for children but the daily injustices meted out by NICE also need to be challenged.