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Advocacy – 
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.

Our demands focus on better legal framework conditions. These aim to better protect and support caring parents, to treat children and adolescents with cancer according to the best and most modern therapy concepts, and to enable equal development opportunities for long-term survivors. Childhood Cancer Switzerland raises public awareness of the situation of those affected and sensitises decision-makers in politics and health care to their needs and concerns.

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

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Rosmarie Quadranti, National Councillor Zurich, BD Group, BDP
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Bea Heim, National Councillor Solothurn, 
Social democrats (S), SP
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Silvia Schenker, National Councillor Basel-Town, Social democrats (S), SP

National Council, autumn session (in German), 23.09.2019 © The Swiss Parliament CH-3003 Bern

A right to the 
best possible therapies 

Most of the 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 survivors 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.

  • 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.

Dr Pierluigi Brazzola and Valérie Braidi-Ketter, CEO of Childhood Cancer Switzerland, with the President of the National Council Marina Carobbio.

Gap in the provision of pain therapies for children

Children who have cancer often suffer from severe pain and therefore need the best possible pain therapy. It becomes all the more urgent when they need palliative care in the last weeks of their lives. To date, paediatric oncologists have been able to rely on a very efficient painkiller made by Mundipharma Medical Company, the production of which was discontinued in 2020 for cost reasons.

It is the most vulnerable patients who depend on the painkiller MST Continus Suspension Retard. Along with adults, this also includes children who are seriously ill with cancer and are fighting for their lives. Because the drug is taken successively over a longer period of time, it tends to be used as a basic pain therapy to make severe pain more bearable during the long therapy period. Thus, many of the young patients urgently need the drug, especially in the last weeks of their lives.

  • 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.

     

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.

Head of the Survivors’ Centre Zuzana Tomášiková (on the right) in the European Parliament.

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