Interview Shanna G. - When insurers won’t pay - Campaigns - Current - Kinderkrebsschweiz

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"It was a massive shock for us when we found out the health insurance company didn’t want to pay"

Interview with Shanna G., affected mother

When Shanna G.’s daughter was six years old, the doctors diagnosed a tumour in her lung. Today, she is healthy again but the family has been through some difficult times. When the physician treating the six-year-old decided to prescribe a new kind of medication because her tumour was not reacting to the standard therapy, the health insurance company initially refused to cover the costs. The insurance company’s medical officer felt the new medicine would not be beneficial. And Finja is not on her own. According to paediatric oncologists, if the initial treatment does not work and the cancer comes back, there is an initial refusal to cover the costs in 50 per cent of cases and in 20 per cent there is a definitive refusal. An unbearable situation for parents of children with cancer who are desperate to have access to life-saving therapies.


Your daughter was diagnosed with a lung tumour in 2019. What exactly happened back then?

We were on a skiing holiday when we noticed that something was wrong with Finja. She was lethargic, pale and was constantly dropping off to sleep. That was just so unlike her because she is otherwise such an active, sporty girl. At first, the paediatrician and the hospital thought she had pneumonia. But when she didn’t react to the antibiotics, we went back to A&E. And then everything happened quickly after that. When we were given the diagnosis, we were all devastated. Finja had a malignant tumour in the lung that was growing very quickly and was inoperable. The first thing I thought was is my daughter going to die? Our fear for her completely pulled the rug out from under our feet.


What happened at hospital after you had received the diagnosis?

Finja was in a pretty bad state. Because the tumour was inflammatory, she was constantly running a high temperature. When the first chemotherapy started, things got even worse. She was constantly being sick and lost a lot of weight. And then she got to a point where she just didn’t want to speak any more. She lost all her vitality and was just apathetic. It was dreadful and as a mother I had never felt so helpless because I couldn’t take it all off her, I couldn’t be there instead of her. The fear that she wouldn’t make it was immense.


What did paediatric oncologists suggest when the standard therapy didn’t show any signs of working with Finja?

The turning point in the therapy didn’t come until the paediatric oncologists concluded, after an additional molecular genetic analysis, that the first diagnosis was insufficient. The tumour had a rare gene mutation. The treatment had to be stopped because the tumour wasn’t reacting to the chemotherapy but instead just kept growing really aggressively. With this new diagnosis, the doctors suggested a targeted drug therapy with Crizotinib. But in Switzerland this particular drug was not approved for children. There were hardly any clinical trials, but Finja’s doctors knew about the successful therapy trials in the US, Canada and Singapore. For them, it was clear that the ratio of benefits to side effects was far superior to conventional chemotherapy. We dared to start hoping again.


The hospital applied to your health insurance company for remuneration in an individual case. What was the answer?

First of all we were relieved that the hospital took over the correspondence with our health insurance company. But it was a major blow when the new therapy was rejected on the grounds that they saw no therapeutic benefit. That once again completely pulled the rug out from under our feet. I really couldn’t grasp that anyone could make such a statement about a child who was facing death. Especially since the paediatric oncologists who were treating Finja were convinced otherwise. I was absolutely furious and desperate. How could it be that they were prepared to pay for chemotherapy that was not working and had such side effects that Finja had to be kept in hospital for a week after the treatment? It was a massive shock for us when we found out the health insurance company didn’t want to pay.


So how did it come about that the medication was actually reimbursed in the end?

We were lucky. Finja’s doctors fought tirelessly for us and finally managed to get the manufacturer to provide the drug free of charge for three months. If that hadn't happened, we would have done everything in our power to finance the costs of the new drug ourselves. There was an agreement that the doctors would send the health insurance company X-rays after two months to see whether the therapy was working. And it was working! Finja’s tumour had started to shrink. The doctors sent X-rays, letters and expert reports to the health insurance company. And then they finally agreed to cover the costs. It was a load off our minds, even if they had only agreed to cover the costs for a few months. 


What do you think should change?

I don’t think many parents know that the medical officers of the health insurance companies (or the invalidity insurance, editor’s note) are not paediatric oncologists. There could well be a general practitioner or a psychiatrist making a judgement on the use of state-of-the-art and complex cancer therapies for children. How can that be? And depending on the particular health insurance company, one child might be able to be treated but another child might not be so lucky? There are doctors deciding on the lives of children who simply do not have the necessary expertise. That is unfair and particularly unjust. That’s why I think it would be important, especially in difficult cases like my daughter’s, for specialists from paediatric oncology to be consulted. This would make it much easier for the parents concerned because they could then be certain that everything is being done medically to ensure that their child receives the best possible therapy.


Finja was lucky and had the new therapy approved. How did she cope with the new therapy?

She recovered pretty quickly and has really blossomed. She didn’t have any more of the high temperatures, she got the colour back in her face, and her hair grew back in that she had lost because of the chemotherapy. Although the new medication was strong, it had far fewer side effects. She was able to leave hospital and only had to return as an outpatient for regular check-ups. Even though Finja’s immune system was run down due to the therapy, this did not stop her doing anything: she could laugh again, run, play with her sister and friends and, above all, get back on the ice – to her much-loved sport. Now, we go to the ice rink several times a week after school and Finja is simply happy. And all of this was only possible because she was treated with this new drug and Finja’s doctors never gave up with the health insurance company. I am eternally grateful for that!

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