Children with cystic fibrosis may wait another three months for medication

(Patria) - Children from the Federation suffering from cystic fibrosis, an incurable autoimmune disease that attacks almost all organs, are still waiting for their medication. Although the Government of the Federation changed the priority list, giving preference to patients instead of new vehicles, the medication for these children may only be available in three months. As explained by the association, procedures are now the problem.

Bosnia and Herzegovina is a country that definitely follows trends. The bad ones. The latest such trend is to ignore the constitutionally guaranteed rights to life and healthcare. Children suffering from cystic fibrosis are losing their 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 life for those suffering from cystic fibrosis is 250,000 euros. Parents do not have that money. In Republika Srpska, this medication is free, but not in the Federation, and precious time is running out, reports Federal Television.

“Our children can no longer wait. Kaftrio is a medication that must be administered from the age of six, and every day we lose is one day less of life for our children,” stated 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 turned 18 and I fear every coming day,” says Zemira Ćerimović, mother of a sick boy.

At a session of the Government of the Federation, a budget rebalance was adopted, as well as a new order of priorities. The new fleet of official vehicles has lost the battle for the lives of children with cystic fibrosis for three months.

“The funds allocated for the purchase of official cars, amounting to two million marks, are being repurposed as aid for patients with cystic fibrosis. This is an ad hoc measure, a palliative measure, but a very welcome one at this moment, which only needs to energize a systematic solution to this problem,” said Toni Kraljević, Minister of Finance of the FBiH (HDZBiH)

“Two million. If it's 12 million for the year, and now we are halfway through the year, he asks for six, meaning we have managed to buy time this quarter. And in the meantime, we are looking for a solution,” said Nediljko Rimac, Minister of Health of the FBiH (HDZ 1990).

Minister Rimac says he has a vision for some solutions and where to find money, but that a systematic solution requires the active involvement of both the Federal and Cantonal Health Insurance Funds, and the Government certainly will. All of this would sound comforting and encouraging if, today, the day after yesterday's promise, it didn't sound contradictory.

When asked when the medication would be available, Minister Rimac replied that it could be available as early as tomorrow through emergency import.

“What we know is that tender procedures and administrative procedures are now following, so we do not expect the medication before September-October. The tender procedure has been completed for Republika Srpska, it does not apply to the Federation, so it is impossible for the medication to arrive tomorrow,” warns Muhić.

According to association data, 28 people in the Federation of Bosnia and Herzegovina suffer from cystic fibrosis. Of that number, 15 are candidates for the drug Kaftrio, including children aged six and older. However, they are waiting for the medication. A boy from the Tuzla Canton, who is in very poor condition and urgently needs this medication, is also waiting. How loudly must it be said: children need help, not today but yesterday. Parents fear that one tomorrow, which could be too late.