ZAGREB, March 11, 2018 – Associations representing the parents of children suffering from serious diseases have told the prime minister that the only systematic solution for innovative treatments is a fund which will be financed by the state budget and not by donations, which is the only offer they have received 100 days after the prime minister promised them a solution for the treatment of their children.
In November 2017, Health Minister Milan Kujundžić said that he understood the desperation of parents of children suffering from Spinal Muscular Atrophy (SMA), who protested outside Government House demanding that Nusinersen (INN), marketed as Spinraza, be put on the list of medications paid for by the national health insurance agency (HZZO), as this is the only medication that can help their children and added that the government was seeking a way to ensure accessibility to medication for all sick children.
One dose of the Sprinraza medication costs about 640,000 kuna. Sprinraza is currently the only treatment for this rare genetic disease and it was quickly approved by the US Food and Drug Administration (FDA) and in May 2017, it was approved by the European Medicines Agency (EMA). There are currently 50 people in Croatia registered with SMA; 39 are children.
Considering public interest raised over Spinraza, the ministry said on its web site that it was taking steps to secure funding for the medication so that all children diagnosed with the disease could receive treatment.
The parent associations recalled that Prime Minister Andrej Plenković promised in November that Health Minister Kujundžić would have a proposal regarding a solution to this problem ready in two weeks. The minister opened a bank account, called on citizens and companies to donate, while the government did not pay a single kuna.
“We expect the prime minister to keep his promise and make systematic concrete solutions for treatment and task the finance minister to do that. Since he made that promise, we have been reading that the government is paying off debts of various institutions, buying planes and cars…So it is not true that there is no money. Either they don’t want to, or don’t know how,“ the association said.
