Belgium to start reimbursing world’s most expensive medicine
Share article:
Share article:

Belgium to start reimbursing world’s most expensive medicine

The medicine became widely known in Belgium when it was used to treat baby Pia. Credit: Geert Van de Velde/ Belga

Starting from December, Belgium will reimburse the world’s most expensive drug, Zolgensma, which is used for treatment against the rare disease spinal muscular atrophy (SMA).

The treatment became more widely known in Belgium two years ago when the family of Pia, a toddler who suffered from the disorder, successfully crowdfunded enough money to afford the medicine, which can cost up to €2 million.

“Access to such an important medicine should no longer depend on collection campaigns: the solidarity of the health insurance is needed here,” Federal Health Minister Frank Vandenbroucke said on Friday in a press release.

SMA is a rare, incurable and hereditary neuromuscular disease that results in the loss of motor neurons and progressive muscle wasting, and that affects around ten babies every year in Belgium.

Before the medicine could be reimbursed, it had to receive approval to be marketed in the European Union. By May 2020, it had been given the green light by both the European Medicines Agency (EMA), which issued a favourable opinion on the drug’s usefulness and effectiveness, and by the European Comission.

Now, following negotiations in collaboration with Ireland and the Netherlands, Belgium reached an agreement with Swedish producer Novartis to have Zolgensma repaid from the end of this year.

Two-year life expectancy

The contract between Novartis and Belgium, signed on Thursday evening, states that Zolgensma will be reimbursed for children up to two years old (or weighing less than 13.5 kg) with symptomatic SMA type one or patients with presymptomatic SMA with up to three copies of the SMN2 gene.

Without treatment, a baby diagnosed with type one of the disease would have a life expectancy of up to two years. Although the treatment had a successful outcome of baby Pia so far, it is yet unclear what the long-term effect of the medicine will be.

Meanwhile, Flanders is working on organising a system for regular screening of all newborns to detect and better help those with pre-symptomatic SMA, as is already the case in Wallonia, where there is organised screening from the first months of a baby’s life.

Alongside SMA, six other diseases will be added to the list of rare disorders that will be added to the checklist for newborn screening in Flanders.

Latest news

Belgian grandparents to walk across Scotland for COP26
A group of Belgian grandparents has set off on a 100 km hike that will take them from Belgium to the Scottish city of Glasgow, just ahead of the ...
Gare Maritime: Brussels’ most exciting new architectural project
A generation ago, the Gare Maritime in the Tour & Taxis industrial site was an abandoned wasteland. It is now a model for urban renewal and ...
Rise in fuel prices will bring Belgian State €547 million in tax, say Workers Party
The sharp rise in fuel prices that have been felt across the continent will bring an additional €547 million to the Belgian State, the Workers' Party ...
Amid backlash, Brussels police chief promises to do better for sexual assault victims
After multiple rallies against sexual violence took place in Brussels last week, with victims offering testimony of poor treatment from police when ...
Hire bikes and scooters: Brussels Parliament wants to restore order
Majority parties in the Brussels Parliament plan to enact new rules allowing communes to set specific and mandatory parking spaces for hire bikes and ...
‘Fourth wave’ has begun: These are the rules
The expected fourth wave of the coronavirus pandemic has begun, according to Belgium’s Health Minister Frank Vandenbroucke (Vooruit). Belgium’s ...
Coronavirus: Ending the pandemic is ‘a choice,’ says WHO chief
The Covid-19 pandemic will end “when the world chooses to end it” because “all the tools” are now available to fight the virus, the World Health ...
‘Can’t keep count’: Instagram page for sexual assault testimonies overwhelmed
An Instagram account compiling testimonies in an effort to give a voice to victims of sexual violence in bars and nightclubs has been overwhelmed ...
Increase in number of people ‘asking King for mercy’ through royal pardons
More and more people living in Belgium have been seeking royal pardons, mainly for fines, largely as a result of it now being possible to send in ...
England now accepting cheaper Covid tests from fully vaccinated travellers
Fully vaccinated travellers who enter England from non-red countries will only be required to book a lateral flow test to take following their ...
Re-introducing face masks indoors considered as Covid-19 situation worsens
Belgium's council of ministers will hold an emergency meeting on Monday to discuss the worsening epidemiological situation, and reintroducing face ...
Federal museums to receive €2.9 million booster shot
Federal museums will receive an additional €2.9 million in support from the government for the fiscal year 2021, of which the first payouts will be ...