Tuesday , October 19 2021

20 minutes: "I hope to have more power"



Should I pay for medical insurance for rare diseases?

On Sunday night, crowdfunding has reached the target of 600,000. Therefore, the patient of SMA Bettina can allow treatment with expensive Spinraza medication. Now look confidently with the future. "I want to live," says 20 minutes later. With the drug, they expect to have more strength and, therefore, be more capable of writing their thesis. He is also anxious to meet his friends and pursue his interests. "I'm sure I'm working for an absolute specialist and success stories with Spinraza are numerous," he says.

He touched it that people really wanted to help. The donation of CHF 100,000 from SVP's National Counselor, Thomas Matter, caused a great deal of revulsion in recent days. Readers accused him of wanting to campaign with him. But Bettina sees it differently: "I am very pleased with her very generous gesture." They welcome the fact that the donation of Matter also triggered a political discussion. "But criticizing your donation would not be appropriate in my opinion as a SMA patient," he says.

6 injections per 600,000 francs

In the coming weeks, the treatment begins. "As a first step, preliminary discussions and clarifications will be carried out in the coming weeks with doctors attending Unispital Zürich. Then the injections should begin soon," says friend Ivana Leiseder during 20 minutes. In the first year of treatment, it would take 6 doses and in the following years three in each case. At the moment, the financing of the first 6 doses is guaranteed, then we must continue to look.

"The drug is injected into the spinal canal," says Nicole Gusset, president of SMA Switzerland. But despite the treatment with Spinraza SMA it is not curable. However, the course of the disease could be stopped. "It is the first SMA medication. So far, there were nothing more than complementary therapies like physiotherapy."

Rouse the society

In spite of the few possibilities of recovery, he expects the Bettina effect to affect: "IV pays for therapy for under 20 years. However, adult access is not guaranteed." Unfortunately, the best medication would not have effect if the affected ones did not have access. "I hope that this case shakes the society and, together with the organizations of patients, we can work in a solution for the fast access of future expensive drugs."


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