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Fight for equal access to the best therapies

When a child is diagnosed with cancer, it is one of the worst things that can happen to a family. And the situation becomes even more difficult if urgently needed medicines and additional therapies are not always paid for by the health insurance companies or are only paid for after the family has been through a great deal of bureaucracy. Affected parents thus find themselves in an extremely stressful situation which causes them to feel very unsure of themselves and can reduce the chances of their child recovering. This is why for months now Childhood Cancer Switzerland has been committed at a political level to combating this inequality in treatment, demanding better cost coverage for all drugs and medication for children with cancer.

In September 2022, there was great surprise when the Federal Council announced it saw no need for action on the reimbursement for cancer drugs for children. This decision was based on an FOPH (Federal Office of Public Health) 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. This is why Valérie Braidi-Ketter, CEO of Childhood Cancer Switzerland, together with National Councillor Manuela Weichelt and paediatric oncologist Pierluigi Brazzola (MD) met the coordinators of the report in the Federal Parliament to highlight the difficulties that families and paediatric oncologists regularly face and to point out the weaknesses of the report. Among other things, 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.

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 a statement on the current amendment of the Ordinance on Health Insurance (KVV) in September. To ensure that every child has equal and rapid access to vital therapies in the future, the umbrella organisation advocates automatic cost coverage for all standard paediatric oncology treatments, the inclusion of specialist experts in the assessment of complex cases, and better cost coverage for all concomitant therapies. These demands are supported by all hospitals in Switzerland that specialise in the treatment of children with cancer.

Within the scope of several targeted awareness campaigns, with a total reach of around 8.5 million, Childhood Cancer Switzerland was very successful in drawing the attention of the public and political decision-makers to the problem and the urgent need for action. For example, when the campaign “When insurers won't pay” was launched and on International Childhood Cancer Day, many leading media reported on the topic throughout Switzerland. These included news programmes on TV such as “Tagesschau”, “19h30”, radio shows such as “HeuteMorgen”, “12h30” and “Radiogiornale” as well as print media such as the newspapers “NZZ” and “NZZ am Sonntag”, the magazines “Schweizer Illustrierte” and “Schweizer Familie”, as well as “Le Temps” and the “Tribune de Genève” and local editions of “20 Minuten”. In addition, important alliances were formed with other partners in the health sector to stand united against the reform.

In November 2022, Valérie Braidi-Ketter, along with Pierluigi Brazzola and two National Councillors, were at the Federal Department of Home Affairs (FDHA) to also inform the personal advisors of the President of the Swiss Confederation, Alain Berset, about the difficult situation in paediatric oncology and the negative impact of the current reform on patients.

In a third step, in December 2022, the umbrella organisation urgently warned all members of the responsible commission of the National Council about the consequences of the current reform. Finally, on 12 January 2023, Valérie Braidi-Ketter was invited to a hearing in Parliament together with other organisations from the healthcare sector. This gave her a platform to once again explain in detail the difficulties surrounding the cost coverage for some vital medicines for children with cancer and shed light on the consequences of the reform on the patients. This hearing also gave the CEO of Childhood Cancer Switzerland the opportunity to answer the numerous questions of the National Councillors on this complex subject.

Following this hearing, the umbrella organisation took a further step to draw the attention of all members of the responsible commission of the Council of States to the negative effects of the planned reform. Childhood Cancer Switzerland is pleased that both commissions ultimately came to the conclusion that in the interests of patients there is, after all, need for action in this area and that the Federal Council was called upon to find a rapid solution together with all the stakeholders concerned. Consequently, the FOPH and the FDHA organised three rounds of negotiations in January and February 2023, in which the umbrella association was able to actively participate. On this occasion, general proposals for improvement within the framework of the current reform as well as specific approaches to solutions in the field of paediatric oncology were discussed in order to improve the situation in the future.

The jointly developed proposals will now go back to the responsible commissions in the National Council and the Council of States before being submitted to the Federal Council. Childhood Cancer Switzerland is optimistic that this need for action will also be recognised at Federal Council level.