The fight against childhood cancer – and red tape

On the occasion of International Childhood Cancer Day on 15 February, Childhood Cancer Switzerland is drawing attention to an often unrecognised, but all the more urgent problem. Although doctors now manage to cure more than 80% of children with cancer, Swiss insurers are still too often refusing to cover the costs of life-saving therapies. Particularly when a child does not respond to the standard therapies or the cancer returns. This is why many families complain about the all-powerfulness of the insurers and their medical officers. These often do not have the necessary expertise to be able to judge the therapeutic effectiveness of a treatment in the case of such a rare illness. Nevertheless, they are the ones who can single-handedly decide whether to cover the costs or not. The legal framework urgently needs to be changed to counteract this dreadful shortcoming. The Federal Council was recently called upon by the relevant Commissions of the National Council and Council of States to quickly find a solution with the stakeholders concerned.

Better chances of recovery thanks to multidiscipline expertise

Every year around 350 children and adolescents in Switzerland are diagnosed with cancer. The life-threatening disease comprises over 60 different types of tumours, which differ greatly from those seen in adults. Due to the low number of cases, the treatment of young cancer patients here is focused on nine highly specialised departments for paediatric oncology. To ensure that every child has the best possible chances of recovery, paediatric oncologists have long relied on international treatment protocols in which Switzerland takes part and, in complex cases, on the expertise of the best specialists from the respective fields. The clinical situation of each individual child is examined in multidisciplinary teams (called tumour boards) and the best treatment options are then recommended. In the event of a relapse, a personalised treatment strategy is thus developed for each patient. National and international networking makes it possible to incorporate the latest medical findings from the various disciplines into treatment, thus ensuring access to the best possible therapy. “The chances of curing children with cancer have increased fourfold since the 1960s. We paediatric oncologists have long since recognised that when it comes to a rare disease, the key to success lies in close national and international collaboration and in bringing together the best experts to save a child’s life,” explains Nicolas von der Weid, Head of Oncology / Hematology at the University Children’s Hospital Basel (UKBB) and President of Childhood Cancer Switzerland.

Insurers often refuse to cover the costs in the case of a relapse 

In spite of all this highly specialised expertise, insurers initially reject an average of 50% of the applications for cost approval in complex cases. And even for standard therapies based on international protocols in which Switzerland takes part and which are approved by Swissmedic, the rejection rate is, on average, 10%. The reason for this terrible state of affairs is a systemic problem repeatedly denounced by Childhood Cancer Switzerland and other patient organisations. The current legal situation is that the medical officer is left with the difficult task of confirming the effectiveness of a treatment and giving the green light for reimbursement – or not, as the case may be. But the general public is not really aware of the fact that most of these medical officers have no expertise in the field of paediatric oncology. “Some paediatric tumours are very rare, and there are so many health insurance companies that a medical officer is only likely to come across a particular case once in their entire lifetime,” says Valérie Braidi-Ketter, CEO of Childhood Cancer Switzerland. In order to systematise the therapeutic benefit of a particular treatment more strongly, the FOPH would therefore like to rely more on a standardised assessment grid in future. But in the case of a rare disease such as childhood cancer with more than sixty different types of tumour, many of the complex cases are a one-off. Thus, standardisation becomes a difficult undertaking in the case of relapses or therapy-resistant diseases.

A race against time

When an insurer turns down the costs of treatment, paediatric oncologists are often faced with a race against time. They have to find different ways of financing the life-saving therapies for their young patients: cancer is particularly aggressive in children and therefore must be treated fast. “The tiresome search for alternative solutions and the numerous appeals that we have to file against negative decisions by insurers simply cannot continue to take place at the expense of our patients,” stresses Pierluigi Brazzola, paediatric oncologist and Head of the Paediatric Department in Lugano. Despite all efforts and often hours of hard work, the coverage of costs for treatment is definitively denied in 20% of complex cases and in 10% of cases involving standard therapies. All the parents can do then is hope that some foundation will support them or alternatively finance their child’s therapy themselves, if they can afford it.

Politicians should find solutions quickly 

Despite these obvious problems, the Federal Council still stated on 7 September 2022 that it saw no need for action on the reimbursement for cancer drugs for children. The responsible parliamentary commissions saw things differently. The National Council’s Committee for Social Security and Health recommends making improvements to the case-by-case remuneration as soon as possible and, in doing so, to examine the possibility of setting up a panel of experts. The relevant Commission of the Council of States agrees and has called on the Federal Council to work out a consensus with the stakeholders concerned at round tables. In order to avoid arbitrary refusals to cover costs in the future and to further increase the chances of children with cancer being cured, Childhood Cancer Switzerland is calling for the legal framework to be modified. The aim here is to automate the coverage of costs for standard treatments and, in the case of complex cases, to legally necessitate the involvement of a panel of experts from the field of paediatric oncology in the decision-making process. This is the only way to ensure that every child with cancer in Switzerland really does have equal access to the best possible therapy.

For more information on the topic of drug reimbursement, click here.

Photo: Juan Encalada/Unsplash