Advocacy – 
standing up for the rights of those affected

Most of the pharmaceuticals drugs used to treat children and adolescents with cancer are actually only approved for adults. This in turn means the health insurance companies are generally not obliged to cover the costs for children. To date, they have often been very accommodating, but there have been many occasions when those affected have been informed that they will not be reimbursed for some of their drugs and, if they are, only with a lot of effort. This uncertainty can be very stressful for parents, both psychologically and financially.

 Childhood Cancer Switzerland actively advocates at the federal level for concrete measures to improve reimbursement for medications used in treating children with cancer. Our goal is to ensure that all medications necessary for treatment are covered by health insurance, so that every child affected by cancer receives the best possible medical care.

New health insurance ordinance in effect as of 1 January 2024

Years of intensive political advocacy have paid off. Following numerous discussions and negotiation rounds with various political stakeholders, during which Childhood Cancer Switzerland was able to successfully assert its demands, significant progress has been made.

The new health insurance ordinance came into force on 1 January 2024

•  Among other things, it’s intended to significantly improve medication reimbursement in the field of paediatric oncology in future and essentially contains the following key points:
• Elimination of provisions that would have severely restricted access to life-saving therapies for children with cancer.
• Mandatory involvement of paediatric oncology experts in the development of a tool designed to better evaluate the benefits of therapies in this field and facilitate future reimbursement.
• For rare diseases without available clinical studies, insurers are now required to consult paediatric oncology experts to assess the potential benefits of a therapy, this had not previously been the case.
• If initial treatment fails or there is a relapse, the costs will be covered by the pharmaceutical manufacturer until a positive treatment response is confirmed. Previously, these costs sometimes used to be passed on to hospitals or families.

Children with cancer who are fighting for their lives need parents by their side to accompany them intensively over a long period of time. Most of the young patients are infants and young children. In the past, many working mothers and fathers have had to cope with many a difficult situation to give children what they need.

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.

Paid care leave with protection against dismissal take effect on 1 July 2021

As part of a Federal Council legislative initiative aimed at improving the compatibility of employment and the care of family members, the national umbrella organisation actively campaigned over several months—at both Federal Council level and throughout all stages of parliamentary deliberation—for the introduction of paid care leave and protection against dismissal for parents of seriously ill children.

The primary objective of these efforts was to raise awareness among political decision-makers across all parties of the specific needs of children and adolescents with cancer, and to secure broad support for this important cause.

These tireless efforts have paid off: although the proposal was initially controversial, both chambers of Parliament voted in favour of granting 14 weeks of paid care leave with protection against dismissal for parents of seriously ill children. This historic decision paves the way for the new federal law, which will come into effect in 2021.