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.