Hungary’s National Health Insurance Fund (NEAK) has made its first decision to fund a child’s Zolgensma treatment for spinal muscular atrophy (SMA). No longer will Lilike’s parents need to ask for donations for the 700-million-forint (EUR 2 million) treatment.
Lilike is the first child to have their SMA treatment funded by the Hungarian government. Previously, these children’s only chance was their parents asking for donations for the extremely expensive treatment that gives their children a chance for a happier life.
Miklós Kásler, Hungary’s Minister of Human Resources, announced in April that the government would begin funding the treatment of children suffering from SMA.
“Previously, the abnormally expensive treatment was practically only available in Hungary through donations from the community. This does show the strength of cooperation developed for the affected children, and we have learned of uplifting and impactful accounts in recent years. In the context of the new agreement our compatriots suffering from spinal muscular atrophy will be able to access their indispensable treatment.”
The government has yet to respond to Telex’s questions asking for the details of funding for the said treatment, as well as how many requests for funding have arrived.
Lilike’s parents announced in a Facebook post that there are no words to explain how grateful they are to everyone who stood by them, “whether through funding, through sharing the news, or helping create the state funding related processes!”
Featured photo illustration via Lilike SMA1’s Facebook page