The Kolibrici association of parents whose children suffer from spinal muscular atrophy (SMA) again protested on Saturday outside the government offices in Zagreb, demanding that the Spinraza drug be made available to all SMA sufferers, including those over 18 years old and patients on life support.

The protesters then spoke to Prime Minister Andrej Plenkovic, Health Minister Milan Kujundzic, his assistant Vili Beros and representatives of two Zagreb hospitals.

They said that the European Medicines Agency (EMA) had approved the use of the drug for spinal muscular atrophy without any restriction by all SMA sufferers, but that Croatian health authorities had made a discriminatory decision and denied the right to the drug to children on a respirator and SMA sufferers above the age of 18.

They called for the decision to be repelled as they consider it unconstitutional.

Saturday’s was the sixth rally held over the past year by parents whose children suffer from SMA.

The head of the Kolibrici association, Ana Alapic, said that there are twelve children who suffer from SMA and are on a respirator. There are around 19 adult SMA sufferers, she said, adding that the association did not know their exact number as over the past year and a half that protests had been organised, nobody cared enough to compile a nation-wide register of SMA patients.

“This makes it clear that there is no awareness that this problem needs a comprehensive and long-term solution,” Alapic said.