Childhood Cancer Switzerland campaigns actively at federal level for specific measures to improve the coverage of the costs of medicines for children with cancer. We aim to ensure that, in the future, all medicines necessary for therapy are covered by the health insurance companies so that every sick child receives the optimal medical treatment. The first step is therefore to make decision-makers in politics and health care aware of the problem so that they can improve the situation of those affected in the future.

• 2022: Children with cancer must be given fast and fair access to vital treatments. This necessitates the reimbursement of these treatments to be regulated fairly and bindingly for all health insurance companies. This is why Childhood Cancer Switzerland welcomes the revision of the legal basis and is actively involved in the current consultation process in the interests of the children concerned and their families. At the same time, the umbrella organisation is continuing its commitment and dedication to the Oncosuisse expert network with other partners with the aim of implementing further measures to ensure better access to important medicines for all patients in the future.
  
  In September, the Federal Council made a rather surprising announcement, saying it saw no need for action on the reimbursement for cancer drugs for children. This decision was based on an FOPH report which stated that in the field of paediatric oncology almost 100 per cent of costs are covered. This statement is a clear contradiction of what paediatric oncologists and affected parents experience in their everyday lives.
  
  As a reaction to this decision, Childhood Cancer Switzerland thus met the coordinators of the report at the Federal Parliament to explain the difficulties families and paediatric oncologists are regularly faced with and thus reveal the weaknesses of the report. For example, it has become apparent that the statement on a reimbursement rate of almost 100% was based on just eight responses from more than fifty health insurance companies in Switzerland. Further meetings with political actors are being planned.
  
  At the same time, Childhood Cancer Switzerland both described the challenges faced in the area of cost coverage and made corresponding proposals for improvement within the framework of its statement on the current amendment of the Ordinance on Health Insurance (KVV) in September. These include the costs of all standard treatments in paediatric oncology being covered automatically, the involvement of paediatric oncology experts in the assessment of complex cases as well as better cost coverage of all supportive therapies. These demands are supported by all hospitals in Switzerland which specialise in treating children with cancer.
  
  In October, the National Council’s Committee for Social Security and Health was made aware of the negative consequences of the amendment. Further discussions are underway.
  
  A very successful media offensive was launched to maintain media pressure on the consultation and its upcoming evaluation by the FOPH. It has been possible to engage leading media such as the Swiss Television, NZZ, NZZ am Sonntag and Le Temps to publicise this significant issue and thus sensitise the general public and decision-makers to the urgent need for action. Furthermore, an alliance with 20 other organisations from the health sector has been established with the aim of further increasing media and political leverage in the current phase.
• In 2021, Childhood Cancer Switzerland continued its political commitment to more justice in the medical care of children and adolescents with cancer. The aim is to standardise the process of cost coverage for what are referred to as off-label treatments in the future. Within the Oncosuisse expert network, Childhood Cancer Switzerland has thus committed to further measures for this purpose aimed at providing affected children with rapid and fair access to all medicines necessary for therapy. Furthermore, Childhood Cancer Switzerland actively accompanied the preparation of the postulate report commissioned by the Federal Council. This is intended to 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 was able to play an active part in defining the main topics as well as in selecting the paediatric oncologists who were interviewed within the framework of the report. In order to draw the attention of decision-makers and the general public to the central issue of covering the costs of vital medicines for children with cancer, the umbrella organisation carried out active press work which met with a broad media response.In 2020, Childhood Cancer Switzerland participated in a series of workshops organised by Oncosuisse with the paediatric oncologist Pierluigi Brazzola. The national cancer network had invited health insurance companies, politicians, medical consultants, representatives of the pharmaceutical industry and the FOPH to exchange ideas and create synergies. The discussion focused, among other things, on equal access to medicines in “off-label use” and an improved assumption of costs for all patients in order to avoid cases of unequal treatment. Thanks to the active participation of Pierluigi Brazzola, Childhood Cancer Switzerland was able to represent the interests of paediatric oncology in this committee. Among other things, the participants drew up a list of undisputed medicines which currently involve a high amount of administration when it comes to the assumption of costs and for which the procedure can be simplified in the future. In the field of paediatric oncology, these are drugs that had been identified in the workshops organised by Childhood Cancer Switzerland with paediatric oncologists.
• 2019/20: the FOPH re-evaluated the provisions on the payment of medicines not automatically reimbursed by the health insurance companies. These include, amongst others, most of the drugs used to treat children with cancer. Childhood Cancer Switzerland ensured that the field of paediatric oncology was taken into account in the evaluation and was given a permanent seat on the evaluation’s support group. Based on the findings and in view of the urgent need for action, various solution approaches were drawn up as part of the evaluation.
• 2019: the Federal Council agreed to draw up a report illustrating the situation re the coverage of costs for medicines for children with cancer and defining possible fields of action to avoid cases of inequality in the future.
• 2019: Valérie Braidi-Ketter and Pierluigi Brazzola, together with an affected mother, were invited as guest speakers to the annual health conference of the SP federal parliamentary group in the Federal Parliament and were able to make decision-makers aware of the difficult situation and propose initial solutions.
• 2019: Valérie Braidi-Ketter (CEO of Childhood Cancer Switzerland) and paediatric oncologist Pierluigi Brazzola visited Marina Carobbio, President of the National Council, to discuss the situation and the challenges when it comes to covering the costs of medicines for children with cancer and to consider initial solution approaches together.

Until the end of 2019, the Labour Law allowed a maximum absence of three days for a parent to care for a sick child. However, caring for a child with cancer takes at least a year and often longer. When it comes to types of cancer that require prolonged therapy, parents often have to stay off work at various points over the following years. In addition to the worries they have about their child, they often worry about the possibility of losing their job and thus their financial security. Childhood Cancer Switzerland has therefore actively campaigned at all levels of parliamentary debate for paid care leave with protection against dismissal, so that families with children suffering from cancer are better protected in the future.

After just one year of intensive advocacy for affected families, Childhood Cancer Switzerland was able to celebrate its first success. In the context of a draft law of the Federal Council on the compatibility of working and caring for family members, the umbrella organisation actively campaigned for months both at the level of the Federal Council and at all levels of parliamentary consultation in favour of paid care leave for parents of seriously ill children and protection against dismissal. The focus of the efforts was to sensitise political decision-makers across party lines to the special needs of children and adolescents with cancer and thus to win them over to our cause. The tireless effort has paid off: although the bill was initially controversial, both houses of parliament came out in favour of a paid care leave of 14 weeks with protection against dismissal for parents of seriously ill children in a historic decision. The new federal law is coming into force in 2021.

If they do not have this medication, they have to suffer from severe pain, be supplied with a complicated painkiller pump or stay in hospital for much longer – an unbearable situation for the children and parents concerned. In order to ensure that great advances in pain treatment, which are so important for the small and particularly vulnerable patients to maintain their quality of life, can continue to be guaranteed, Childhood Cancer Switzerland demands that this gap be closed as quickly as possible.

• Further talks with Mundipharma planned
  To ensure that children do not have to suffer unnecessarily, Childhood Cancer Switzerland is continuing its efforts in 2022 to find alternative solutions following the halt in production of the central painkiller in liquid form for children with cancer by the company Mundipharma. Practical guidance agreed with the producer on how to safely break down the medicine into capsule form is being advanced.
• Raising awareness
  In order to draw attention to the urgent need for action for the children affected, Childhood Cancer Switzerland launched an awareness campaign on this topic in 2020. The press, particularly in French-speaking Switzerland, reported widely on the current plight of children and parents in Switzerland. In this way, we were able to reach around 470,000 people.
• Appeal to the Federal Office of Public Health (FOPH) in October 2020
  To ensure that children do not have to suffer unnecessarily, Childhood Cancer Switzerland together with representatives of the University Children’s Hospital Basel (UKBB), Bern University Hospital, the Baselland cantonal hospital, the Swiss Association of Public Health Administration and Hospital Pharmacists as well as the Swiss Society for Palliative Care called on the Federal Office of Public Health (FOPH) to find a swift solution to this gap in care. “The federal government’s room for manoeuvre is generally limited when it comes to the provision of medicines and this is something that was desired by the legislator,” says the FOPH. A statement that has serious consequences for the children concerned.