Thank you for giving me the opportunity to represent the voice of parents and young patients with cancer.
Today, cancer remains the first cause of death by disease in the European Union for children and young patients above one year of age.
Today, two-thirds of young survivors have to go on with their life with the toxic consequences of the treatment they have received.
This is why I am particularly thankful that the European institutions placed paediatric cancers among the priorities of Europe’s Beating Cancer Plan.
As a mother and founder of the Belgian foundation KickCancer and member of the Regional Committee of Childhood Cancer International – Europe, I see this initiative as a wonderful opportunity to drastically improve treatments and care for young patients.
We cannot stress enough the facts that when young patients are diagnosed with cancer, not only must we aim at curing them all – and not just at extending their life- but also ensuring that once in remission, they enjoy life to its fullest.
This means that they need access to
the best care
and
the best drugs.
Access to the best drugs means: make sure that a drug is easily prescribed and affordable. Yet, today, this is easier said than guaranteed:
Many drugs are used off-label in paediatric oncology. As a result, some are difficult to prescribe or are not reimbursed by social security in some countries.
This is why paediatric indications must be systematically investigated where there is a pre-clinical reason to do so and our legal framework must ensure that paediatric indications are put on label.
In some member states, young patients have no access to basic pain killers when they undergo a procedure.
This is due to the lack of training and sensibilisation of the healthcare professionals to the necessity of pain management for young patients.
The Plan’s initiative to improve and standardise the training of healthcare professionals is extremely welcome in this respect and must include something specifically about pain management for young patients.
Some drugs approved by the European Medicines Agency – at the European level- are not available in all the Member States’ internal markets.
Manufacturers do not apply for a national registration in all countries. Sometimes because it does not trust a given Member State, regarded as a “bad” payer, or because they consider the national market as “too small” and not “worth the administrative effort”.
We need to make sure that access is simplified by reducing bureaucracy and encouraged, by incentivising registration in all member states.
Drugs are really accessible to ALL patients, when they do not cost them.
This is why we need a centralised assessment of the drugs next to the European Medicines Agency for the Health Technology Assessment part.
If pharma companies could provide all clinical data for reimbursement purposes one time, centrally, the whole process could be faster, simpler and more efficient for all European citizens.
This should also reduce the time between the EMA’s and the national HTAs’ approvals.
This does not change the fact that the price of drugs must be transparent. We shall never achieve accessibility if new drugs, even for rare indication, are sold at a very high price.
One example: oral form of vinorelbine in Belgium
My son is currently in treatment with vinorelbine… its intravenous form is not reimbursed because it is off-label when prescribed to children despite the fact it is “STANDARD OF CARE” for his condition.
On top of that for comfort reason, we opted for the oral form because after 8 years of treatment, we considered that avoiding weekly hospital visits would be key to my son’s compliance and quality of life.
But the oral form was never approved on the Belgian market because the manufacturers never applied for it.
As a result, we need to buy the pills from other member states – it is complicated and of course we must pay for them ourselves.
It takes a lot of effort – and money- to treat my son. This is not fair.
Access to the best care means that healthcare professionals be trained and have as much experience as possible.
Today, some young patients’ cancer is overlooked because paediatricians do not consider cancer as a possibility when they examine a young patient – it is so rare.
Ensuring that ALL paediatricians are trained to detect or exclude cancer should be included in the training effort proposed by the Plan.
Every member state has its own geographic and historic specificities.
Yet, with an increased number of patients, comes experience and from experience derive greater skills and better care.
We welcome the creation by the Plan of Comprehensive Cancer Centres. Let’s make sure to include young patients in this initiative and to the extent possible, let’s also define guidelines on the minimum number of patients to be treated for a centre to be qualitative.
In some cases, access to the most experienced team is not within local reach.
The European Reference Networks are the perfect answer to this and one of Europe’s greatest achievements. We need them to be sufficiently financed in order to ensure their long-term effectiveness.
Most young survivors suffer from long-term side effects caused by their treatments.
We must organise a qualitative long-term follow-up to prevent and reduce the co-morbidities. We need guidelines to orchestrate the long-term follow-up with multi-disciplinary consultations in order to reduce its time burden.
Digital tools can offer great opportunities as they will facilitate patients-reported outcomes.
So those young patients can enjoy life to its fullest. We know that the experience of cancer can never be erased but let’s strive for a world where young patients are not reminded of cancer every day.
Cure. Don’t cry