standing up for the rights of those affected
Children with cancer and their families have no voice at federal level. In recent years, it has become increasingly clear just how important it is for those affected to have a stronger influence on health policy decisions and legislative plans. Childhood Cancer Switzerland is therefore strongly committed to their interests.
Optimal framework conditions for affected parents
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.
- Focus: paid care leave with protection against Dismissal
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.
- Our success: the new federal law to come into force in 2021
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.
Childhood Cancer Switzerland in the debates of the National Council
- Focus: covering the costs of drugs
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.
- Important milestones we have achieved
- 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.
- In focus: closing the supply gap
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.
- Important milestones we have achieved
- Meeting with Mundipharma
Valérie Braidi-Ketter (CEO of CCS) and paediatric oncologist Eva Maria Tinner met the CEO of Mundipharma and his team on 17 March 2021. The discussions focused on the question of the framework conditions for resuming production of the drug as well as alternative solutions so that children do not have to suffer unnecessarily in the meantime.
- 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.
- Meeting with Mundipharma
Equal opportunities for
childhood cancer survivors
The Childhood Cancer Switzerland Survivors’ Centre actively promotes the interests of those affected. It cooperates nationally and internationally with various stakeholders in order to more purposefully advance the improvement of follow-up care with the exchange of experience and knowledge and to gain insights into the latest research findings. Find more information here.
Production stop of important painkiller
Childhood Cancer Switzerland meets with CEO of Mundipharma to find a solution.
Care leave comes into force
The new federal law, for which we have campaigned politically, will be implemented in 2021.
International Childhood Cancer Day
International Childhood Cancer Day will be held on 15 February 2021.
When an important painkiller is missing
The production of a drug for pain therapy is stopped for financial reasons.
FOPH evaluation on the topic of “medicines in off-label use”
Childhood Cancer Switzerland represents the interests of paediatric oncology in the FOPH evaluation.
Workshops with paediatric oncologists
Childhood Cancer Switzerland discusses possible solutions for drug reimbursement together with pediatric oncologists.
Health conference in the Federal Parliament
Childhood Cancer Switzerland took part in a health conference of the SP federal parliamentary group.