Parents of Children with SMA Hold Protest in Zagreb

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ZAGREB, January 26, 2019 – The Kolibrići association of parents of children with SMA (spinal muscular atrophy) held yet another protest rally on Saturday, outside the government offices in Zagreb, asking that the Spinraza drug be made available to all SMA sufferers and calling for repealing the Croatian Health Insurance Agency’s decision (HZZO) not to make the drug available to patients older than 18 and those on life support.

After the rally, the protesters were received for talks by Prime Minister Andrej Plenković, Health Minister Milan Kujundžić, his assistant Vili Beroš and representatives of two Zagreb hospitals.

The protest organisers 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, while the HZZO had made a discriminatory decision denying the right to the drug to children on a respirator and SMA sufferers above the age of 18.

They called on the health minister, the government and the HZZO to repeal the decision which they consider to be unconstitutional, noting that they would not give up on their struggle.

Today’s protest was the sixth rally held over the past year by parents whose children suffer from SMA and the second one to be held in the capital.

The head of the Kolibrići association, Ana Alapić, 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 sufferers. “This makes it clear that there is no awareness that this problem needs a comprehensive and long-term solution,” Alapić said.

The protesting parents all said that they would not give up their fight and that the decision not to approve the use of Spinraza by SMA patients above 18 and children on a respirator meant the death sentence for them.

They also called on Minister Kujundžić to provide evidence for his assertion that the drug was ineffective in patients above 18.

Health Minister Kujundžić said that the relevant commission of the Croatian Health Insurance Agency (HZZO) would issue a new opinion on the Spinraza drug in 15 days. “Money was not an issue in the case of 30 other patients and it won’t be an issue in the case of these 12 patients, however, the drug cannot be registered by bypassing professional rules,” said Kujundžić after the meeting.

“The HZZO Medicines Commission will issue a new opinion in 15 days on what it has found in studies,” the minister said, adding that the decision would be made by medical professionals who deal exclusively with spinal muscular atrophy in children and adults. The minister would not speculate as to what the commission would decide.

Alapić said after the talks that she was partially satisfied with the meeting with government officials. “I am partially satisfied but I am aware that we have to wait for the opinion of medical professionals. I believe the opinion will be in our favour,” she said.

More news on the medical issues in Croatia can be found in the Lifestyle section.


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