Parents of children suffering from life threatening medical conditions have on Saturday demanded that the government urgently responds to calls by European Health Commissioner Vytenis Andriukaitis to, within European institutions, find the relevant means to treat children suffering from spinal muscle atrophy and other diseases.
The demands from the parents from the ‘Kolibrici’ Association were directed at Croatia’s Health Minister, Milan Kujundzic, and Prime Minister Andrej Plenkovic.
“We are surprised about the statement from the European Commissioner and the fact that nobody has until now contacted the relevant EU institutions. It will soon be five years since we formed a Union and such things must be public,” said the President of the ‘Kolibrici’ Association, Ana Alapic.
The ‘Spinraza’ drug is still unavailable via the Croatian Health Insurance Fund, she said.
The Association said in a press release that the drug was approved in Europe on June 1, 2017, but remains unavailable to those suffering from the disease in Croatia. The Croatian Health Insurance Fund has registered the drug in May, but not for children dependent on a respirator or for those over 18 years of age, which the Association said was discriminatory.