Parents of children suffering from cystic fibrosis in the Federation of Bosnia and Herzegovina are once again in fear, because the end of the year is approaching, and therapy for their little ones is provided until December 31, 2025.
In the Association of Children with Cystic Fibrosis in Bosnia and Herzegovina, they are rightly afraid that at the beginning of 2026, their children’s life-saving therapy will be stopped, because tenders for the procurement of medicines are only announced in the fourth and fifth months of the current year.
Annual therapy costs half a million KM
– Our children have already had therapy interrupted once, when their health condition drastically worsened. We are aware that this may happen to us next year as well, because the budget will not be adopted until January 1, nor will the tender for the procurement of medicines be announced – emphasizes Mirsada Merdžanić-Softić, president of the Association.
He says that the Association has sent letters to the Government of the FBiH, Prime Minister Nermin Nikšić’s cabinet, the Federal Ministry of Health and the Institute of Health Insurance and Reinsurance of the FBiH on several occasions, with only one question – will children with cystic fibrosis receive life-saving therapy from January 1, 2026?
– We only received an answer from the Institute, where they told us that therapy for children suffering from cystic fibrosis was included in their plan for 2026 and that they sent it for further consideration. This is encouraging, but it means nothing to our children if the government and the ministry will not provide money for the purchase of medicines – says Merdžanić-Softić.
The Association adds that they cannot believe that the Federal Government, after two years of children receiving therapy, was not able to include the first four months of the current year in the budget in order to relieve parents of constant worries – will the children have medicine.
– We have explained this to the authorities in the Federal Government on several occasions, but it is obvious that they have not taken any action on this matter. They do not announce a tender for a year, but from May to December of the current year, and for the first four months they find some possibilities to cover it – explains Merdžanić-Softić.
In the Federation of Bosnia and Herzegovina, 26 children were affected by cystic fibrosis. The Association adds that 23 children, according to the recommendations of doctors, are candidates for new therapy, while three are being treated with other drugs.
– This year we received three new patients in the Federation. There are two patients in Brčko District who are not covered by therapy, because no one can agree on how to do it – Merdžanić-Softić points out.
The drugs kaftrio and kalydeco are genetically modified therapy that completely changes the way sick children function.
Annual therapy for one child costs close to half a million KM, depending on the dose that the doctor prescribes individually for each patient.
– For our children, the new therapy literally means – life. Since receiving it, their state of health is incomparably better. The number of inhalations is reduced, as well as the medications they take and hospitalization. I will give an example of my child who has not been hospitalized for a year, which is a huge success for us. Those children now lead a normal life. We even had those who went on excursions – emphasizes Merdžanić-Softić.
Medicine is a new chance for life
The Association states that they are constantly trying to explain to the authorities in the Federal Ministry of Health that treatment costs more when the authorities do not get the treatment on time.
– Children then have to be hospitalized because secondary diseases such as diabetes, liver problems develop as a result… That’s why parents constantly appeal that therapy should not be interrupted even for a single day, as this endangers children’s lives. Therefore, I once again appeal to the authorities in the FBiH not to allow them to carry anyone’s child on conscience – concluded Merdžanić-Softić.
Let’s remind you that since 2020, the drug Kaftrio, which is a new chance for life for patients, is in use all over the world, including the countries of the region, but also in Bosnia and Herzegovina. to the RS entity, where it is available to patients from September 2022.
In FBiH, the medicine arrived in November 2023, and the children started receiving therapy in December of the same year.
Cystic fibrosis is a genetically inherited disease caused by a mutation of the CFTR gene, and there are more than 2,000 different gene mutations.
Kaftrio is targeted at the most common mutation (accounting for more than 80 percent of all cases worldwide), which is the delF508 mutation.
Almost all children in Bosnia and Herzegovina, as previously stated by the Association, have this type of mutation on at least one allele (heterozygous delF508 mutation), and often on both alleles (homozygous delF508 mutation), it says Factor.
