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Insight into our political activities

The small number of children and adolescents with cancer compared to the number of adult cancer patients means it is less attractive for the pharmaceutical industry to develop and market specific drugs for this group of patients. That is why most of the drugs used to treat children and adolescents with cancer are actually only approved for adults. However, since using such drugs in what is referred to as off-label use does not fall under the official indications, health insurance companies are not always obliged to cover the costs. As a result, paediatric oncologists and parents are reporting more and more cases of health insurance companies refusing to pay for vital medication. This uncertainty puts a double burden on the parents: on the one hand, they cannot always finance the treatment costs themselves, and, on the other, they cannot with any certainty know their child will have access to the best therapy options. Thanks to medical advances, children will also increasingly have access to innovative therapies, which goes hand in hand with rising cost pressure. It is therefore to be feared that the problem will continue to grow in the coming years.
 

This is why Childhood Cancer Switzerland actively campaigns at federal level for specific measures to improve the coverage of the costs of medicines for children with cancer. Our aim is for all medications necessary for therapy to be covered by health insurance or invalidity insurance (IV) in the future. This is the only way to ensure that every sick child receives optimal medical treatment. It is important to make decision-makers and the public aware of our concerns.
 

Childhood Cancer Switzerland advocates evaluation of the FOPH
With the help of the National Council’s Committee for Social Security and Health, Childhood Cancer Switzerland succeeded in convincing the Federal Council to specifically evaluate the situation regarding covering the costs of medicines in the field of paediatric oncology and to have a report drawn up. The Swiss Federal Department of Home Affairs, which was commissioned by the Federal Council with the evaluation and report, confirmed in 2021 that the results will be available in the first half of 2022. In order to better understand the situation in the field of paediatric oncology, discussions were held with paediatric oncologists from all over Switzerland in autumn 2021. Childhood Cancer Switzerland was invited to help define the main topics and select the experts. We hope that the report will help to highlight the difficult situation of paediatric oncology and find solutions to sustainably improve the situation of those affected in this field.
 

Childhood Cancer Switzerland is committed to the national cancer network Oncosuisse
Since 2019, experts from various fields have been meeting regularly to jointly develop measures to ensure access to cancer drugs in the future. These measures were put into specific terms in seven projects. With the support of a network of around one hundred professionals, these will be put into practice in the next phase. Three work topics are of particular interest for the field of paediatric oncology.
 

Extended right of application for medication
In principle, drugs and medication are only reimbursed by compulsory health insurance companies if they are authorised and are on what is called the speciality list (SL list). At present, however, applications to Swissmedic for the approval of active substances or new indications are reserved exclusively for manufacturers. This means that only the pharmaceutical industry can submit an application to the FOPH for a medicine to be included on the speciality list and thus become eligible for reimbursement from the compulsory health insurance companies. However, in some cases there is a lack of incentive to submit indications for approval or inclusion on the SL list, for example if patents have expired or the Swiss market segment is too small. This is a major challenge for paediatric oncology, an area where little research is carried out by the pharmaceutical industry for reasons of profitability, and thus hardly any specific applications for approval are submitted. In the interest of patients, the experts from the national cancer network are currently investigating whether other organisations, such as medical societies, could apply for approval for new indications or indication expansions and/or inclusion on the speciality list in the future.
 

Recommendation list for uncontested medicines
Most of the drugs used to treat children with cancer are actually only approved for adults. This comes under what is called off-label use and since they do not fall under the official indications, they are only approved and reimbursed by the health insurance companies in exceptional circumstances and under certain conditions. As the last evaluation by the Federal Council showed, these cost approvals are handled differently by the health insurance companies, a situation which can lead to inequality in the treatment of cancer patients. Some of the applications submitted also concern drugs that are undisputed, as their therapeutic benefit has long been proven and they have been on the market for a long time. In order to provide cancer patients with faster access to these undisputed treatments in the future, experts from the national cancer network have developed a shared approach. In collaboration with the paediatric oncologist Pierluigi Brazzola, Childhood Cancer Switzerland has succeeded in representing the interests of paediatric oncology. Participants were able to agree on a list of undisputed medicines and indications the reimbursement of which is to be simplified in the future. In the field of paediatric oncology, this concerns three important drugs for which reimbursement has been rather slow so far. A declaration of intent has already been signed with some health insurers. A simplified procedure for these applications will be developed in the coming months, and a pilot project launched subsequently.
 

Expert panel for difficult cases
Increasingly complex personalised medicine is currently causing a sharp rise in off-label use. However, in order to be able to expertly assess the therapeutic benefit of a highly specialised therapy, medical consultants at the health insurance companies would have to have increasingly in-depth specialist knowledge. If this benefit is not recognised by the health insurance company, the costs of the therapy are not covered. In the field of paediatric oncology, refusals by the health insurance companies are increasingly to do with treatments for relapses or refractory diseases.
 

In order to better support the medical consultants in their assessments in the future, the Federal Council illustrated the importance of an expert panel for difficult cases in its last evaluation in order to avoid cases of unequal treatment of insured persons in the future. This suggestion was taken up as part of the project work of the Oncosuisse cancer network. The aim of this project is to better support health insurance companies in a highly complex area in the future and thus give patients the security of knowing that the necessary expertise is available to assess the therapeutic benefit. Within the working group, Childhood Cancer Switzerland is committed to developing an expert panel model and to pushing for its integration into the existing system.