Questions and answers

1. WHY SHOULD I HELP BETTINA?

Bettina wants to live – like you, like all of us. The 31-year-old from Zurich in Switzerland suffers from spinal muscular atrophy (SMA). SMA is a genetic disease characterized by a gradual decomposition of the muscles. Bettina’s condition has already reached a very critical state. Bettina urgently needs the drug Spinraza to survive.

2. HOW CAN I HELP BETTINA?

Since Bettina’s health insurance company refused to finance Spinraza, Bettina is dependent on your support. Donate the amount for the next cinema visit, the new shoes or the usual takeout coffee to Bettina and make the treatment with Spinraza possible for her.

Donations can be made via payment slip/bank transfer (IBAN: CH5200257257GP1103682 / BIC: UBSWCHZH80A / Bank: UBS / Recipient: Bettina Rimensberger, 8623 Wetzikon, Switzerland / Payment reference: Bettina wants to live) or on http://www.gofundme.com/bettinawillleben.

3. WHAT ARE THE COSTS OF SPINRAZA?

Spinraza costs around 90,000 francs per dose. In addition, there are costs of approximately CHF 10,000 per dose for application into the spinal cord via CT. In the first year of treatment 6 doses are required, in the following years 3. This amounts to a total of 600,000 Swiss francs for the first year of treatment.

4. I CAN ONLY DONATE 10 FRANCS. DOES THAT ALSO HELP?

Every amount, no matter how small or big, helps Bettina to survice. For example, if everyone in Zurich donates CHF 1.50, the target amount of CHF 600,000 is secured. With the 600,000 francs we can make the first 6 doses of Spinraza including application possible for Bettina.

5. WHAT HAPPENS AFTERWARDS?

With the 600,000 francs we will build a bridge for Bettina: At the moment there are no regulations in Switzerland as to who has to bear the costs for the drug. In Germany, for example, the drug has to be financed by the health insurance funds. We want to gain time for Bettina until hopefully the situation is settled here in Switzerland as well.

FURTHER QUESTIONS AND ANSWERS
WHAT’S BETTINA SUFFERING FROM? 

Bettina suffers from spinal muscular atrophy (SMA). This is a genetic disease characterized by a gradual decomposition of the muscles. The muscle decay also paralyses breathing. In most cases, SMA leads to death sooner or later.

WHAT’S BETTINA’S CONDITION?

Besides her eyes and mouth, Bettina can only move her left index finger. However, this is vital for her: because with this she can stay in touch with her friends, move around independently with the electric wheelchair and write her doctoral thesis.

IS THERE A DRUG AGAINST SMA?

Yes, Spinraza. Spinraza was launched at the end of 2016. It was approved for all age groups in Switzerland in September 2017.

WHAT ARE THE BENEFITS OF A TREATMENT WITH SPINRAZA?

Spinraza can stop the course of the disease and even improve health. Patients often regain lost motor skills. In Bettina’s case, this would mean having more strength in the hand again, being able to speak better and perhaps even hold the head better.

HAS SPINRAZA BEEN TESTED IN STUDIES?

Yes, clinical studies have shown the effectiveness of Spinraza impressively. No serious side effects have been found.

WHY IS SPINRAZA SO EXPENSIVE? 

The research and development costs for a drug against a rare disease are usually very high. This also determines the price.

WHY IS SPINRAZA ONLY COVERED BY HEALTH INSURANCE IN VERY FEW CASES?

To make it mandatory for the health insurance companies to finance the drug, it must be on the list of specialities of the Federal Office of Public Health. Inclusion in the list can take from a few months to years. Since Spinraza has only recently been approved in Switzerland, this process has not yet been completed.