All children suffering from spinal muscular atrophy (SMA) for whom therapy was recommended will receive medication, either at the expense of the Croatian public health fund (HZZO), or as part of a clinical study, the Health Ministry said on Monday.

The Kolibrici (Hummingbirds) association, which aims to improve the lives of children with serious illnesses, has recently accused HZZO of discrimination, saying that children on life support, as well as people over the age of 18, were excluded from being covered by the publicly funded treatment for SMA. Kolibrici said that only four children in the entire country are currently receiving the medication.

The ministry said that 15 SMA patients in Croatia were on life support, and some of them were older than 18.

“Unfortunately, so far none of the drug producers have provided therapy for this category of incurable patients. However, all children suffering from spinal muscular atrophy who are not on life support will receive the drug Spinraza or will be included in the clinical study,” the ministry said.

About 50 minors in Croatia are suffering from SMA, the Health Ministry said.

The first child in Croatia started the Spinraza therapy in October 2017, and so far five children have started treatment with this medication. Another 19 are currently making arrangements for therapy. Since Spinraza was included on the HZZO’s list of basic drugs in April 2018, the drug is provided at the expense of compulsory health insurance, the ministry said.

Also, an additional 14 patients have been included in a clinical trial of the new drug for SMA treatment, conducted by the Swiss pharmaceutical company Hoffmann–La Roche, following a January 2018 meeting between Croatian Prime Minister Andrej Plenkovic and Christoph Franz, Chairman of Hoffmann–La Roche, after which Croatian patients have been included in the clinical testing of the new drug, the ministry added.

Sprinraza was approved by the European Medicines Agency (EMA) in early June.

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