Parents of children, whose children suffer from cystic fibrosis, once again protested in front of the headquarters of the Federal Government.
They scheduled the gathering because, they emphasize, they have not yet received the promised money for the purchase of the much-needed medicine Kaftrio.
They say that they were aware that this could not be done in the short term, because the decision of the Federal Parliament on the redirection of funds as part of the budget rebalancing is needed. Due to the fact that at the last session the Government withdrew the agenda item related to budget rebalancing, the procedure was additionally slowed down.
Children from the Federation suffering from cystic fibrosis, an incurable autoimmune disease that attacks almost all organs, are still waiting for their cure. Although the Government of the Federation changed the list of priorities, giving priority to patients instead of new vehicles, the medicine could be available to those same children only in three months. As explained by the association, the problem now is procedures.
Bosnia and Herzegovina is a country that definitely follows trends. The bad ones. Children suffering from cystic fibrosis are losing the battle for life. The value of life in Bosnia and Herzegovina is an irrelevant category. However, prices are what we understand. The price of the battle for the life of patients with cystic fibrosis is 250,000 euros. Parents don’t have that money. In the RS this medicine is free, in the Federation it is not, and precious time is running out.
“Our children cannot wait any longer, Kaftrio is a drug that must be administered from the age of six, and every day we lose is a day of life less for our children,” said Elvira Muhić, president of the Association for Cystic Fibrosis in Bosnia and Herzegovina.
“They barely turn 18, this is the last straw for us, because my child has turned 18 and I fear every day that comes,” says Zemira Ćerimović, the mother of the sick boy.
At the session of the Government of the Federation, the budget rebalancing was adopted, as well as a new order of priorities. The new fleet of official vehicles lost, for three months, the battle against the lives of children suffering from cystic fibrosis.
“The funds intended for the purchase of official cars in the amount of two million marks are being repurposed to help patients with cystic fibrosis. It is an ad hoc measure, a palliative measure, but very welcome at this moment, which only needs to dynamize the systematic solution to this problem”, said Toni Kraljević, Minister of Finance of FBiH (HDZBiH).
“Two million. If it is 12 million at the level of the year, now we are halfway through the year, he is asking for six, so we managed to buy time this quarter. And in the meantime, we are looking for a solution”, said Nediljko Rimac, Minister of Health of FBiH (HDZ 1990).
Minister Rimac says that he has a vision of some solutions and where to find the money, but that for a systemic solution it is necessary that the Federal and Cantonal Institute for Health Insurance be actively involved, and the Government will certainly do so. All this would sound comforting and encouraging if today, the day after yesterday’s promise, it didn’t sound contradictory.
When asked when the medicine will be available, Minister Rimac answers that it can be as early as tomorrow through interventional importation.
“What we know is that they are now following tender procedures, administrative procedures, so we do not expect the medicine before September-October. The tender procedure was completed for the RS, it is not valid for the Federation, so it is impossible for the medicine to arrive tomorrow”, warns Muhić.
According to the data of the association, 28 people have suffered from cystic fibrosis in the Federation of Bosnia and Herzegovina. Of that number, 15 people are candidates for Kaftrio, including children aged six and over. But they are waiting for a cure. A boy from the Tuzla Canton is also waiting, who is in a very bad condition and needs this medicine very much. How loudly to say: children need help, not today but yesterday. Parents fear that one tomorrow, which may be late.
