Novartis has put parents of children up to two years of age suffering from the rare muscle-wasting disease SMA in a state of emergency of hope and anxiety. Because this year Novartis wants to raffle off 100 doses of the million-dollar gene therapy Zolgensma – in countries outside the USA where the therapy has not yet been approved.
The ethics professor Nikola Biller-Andorno (48) is horrified. Deciding by lot who should receive a promising drug for a serious illness is a very problematic concept, the director of the Institute for Biomedical Ethics at the University of Zurich told BLICK. “It feels a bit like playing with people’s lives or well-being,” she adds.
One could argue that a lottery is still fairer than it depends on which fund you are insured with or whether you have personal relationships or other benefits. But, she says, the claim to healthcare is to provide effective therapies for everyone who needs them.
Sharp criticism from EU countries
From the medical ethicist’s point of view, it would make more sense instead of the lottery to ensure that the approval is checked quickly and that the price is reasonable. In view of the large sums that the Swiss spent on health care and medical research, everyone should also be cared for as needed.
Biller-Andorno understands the criticism that the health directors of Austria, Ireland, Holland and Belgium published in a joint communication on Thursday. Draws are allowed, but the great uncertainty that this triggers and the lack of transparency are completely unacceptable, write the ministers. Next: “This only increases the suffering of the families affected.”
Novartis will find Los the best possible solution
Novartis emphasizes that the award program was developed with an independent medical ethics committee. It was intended to enable the best possible distribution with the limited number of Zolgensma doses without preferring one child to the other. The pharmaceutical company is aware of the problem of a raffle.
In order for patients to be able to take part in one of the biweekly raffles, a permit must be obtained from the health authority for the treatment. The patient’s doctors must then submit the application for participation in the raffle to Novartis, or to the manufacturer’s subsidiary Avexis.
About one in 10,000 newborns is born with the disease SMA, the trigger is a genetic defect.