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Severely ill children in FBiH without the necessary medicine

As a result of an irresponsible attitude of authorities, children suffering from cystic fibrosis in FBiH do not have a medicine that can improve their quality of life and prolong it.

In the Federation of Bosnia and Herzegovina (FBiH) there is no medicine for children suffering from cystic fibrosis because there is neither money in the budget nor legal provisions on rare diseases that would enable the unhindered procurement of medicines.

Kaftrio is a drug that relieves symptoms in patients, enables normal growth, and extends life expectancy by 30 to 40 years. The drug costs between 230,000 and 250,000 euros per patient per year, depending on the age of the patient. There are at least 28 patients with this disease in this entity.

Cystic fibrosis is a rare, chronic, and incurable disease that attacks almost all organs. Pneumonia weakens the patient’s body, and patients are malnourished, and all this causes a poorer oxygen supply to the brain and loss of concentration and memory.  Those suffering from this disease barely live to be 20 years old.

Although the Health Committee of the Parliamentary Assembly of the FBiH adopted an initiative in June of last year to urgently provide the funds necessary for the procurement of this medicine, it has not been procured. The Cystic Fibrosis Society in Bosnia and Herzegovina appealed to the Government and the Ministry of Health of FBiH to procure the drug, but all they’ve got were promises. This is why today (on June 22, 2023 author’s note) at 12:00 a.m. they will stage a protest in front of the Federation Ministry of Health.

According to the President of the Society, Elvira Muhić, the medicine has not been procured due to the irresponsible attitude of the authorities: “Their excuse is the fact that the medicine was not registered. And that getting the drug for cystic fibrosis would be a discrimination against other rare diseases. They claim they will do whatever they can but that nothing can be solved overnight. It is the typical excuse.”

The medicine is not registered with the Agency for Medicines and Medical Devices of Bosnia and Herzegovina, but it can be procured through emergency import.  This procedure is used to procure non-registered medicines in case of urgent and justified medical need, but this was not done in this case. The FBiH Ministry of Health did not want to explain the reasons to CIN over the phone. FBiH Prime Minister Nermin Nikšić did not respond to calls from reporters.

“Until rare diseases are included in the Health Care Act, every rare disease will face the same problem. Any new drug will face this kind of problem. We simply do not have a legal basis for implementing new and innovative therapies until rare diseases are recognized in the system,” says Elvira Muhić.

Depending on the bureaucracy, the patients have less and less chance of a normal life because the disease progresses and damages their organisms.

“Kaftrio is virtually a new chance for a child’s life”, Muhić pointed out.

This is not the first time that children in FBiH suffering from cystic fibrosis have problems with treatment. Two years ago, CIN wrote about children suffering from cystic fibrosis in Una-Sana Canton who have been waiting for months for the Health Insurance Institute to approve expensive medicines. As reported, while waiting for approval, the condition of some of the patients worsened, and some moved abroad to receive unhindered treatment.

Their parents confirmed for CIN that the medications were coming with at least a month or two delay each year. In addition, the Institute required them to submit extensive medical documentation each month to confirm the incurable disease of their children.

While waiting for bureaucratic approvals parents were exploring various ways to ease their children’s pain without medication– ventilation using a sterile mixture of salt and water or borrowing medication from parents from other places.

Fighting Bureaucrats for Children’s Lives
Children suffering from cystic fibrosis in Una-Sana Canton have been waiting for months for the Health Insurance Institute to approve expensive medicines. While waiting for approval, the health condition of some has deteriorated and some have moved abroad.

“This is a revolutionary drug. Excellent!”, explains Biljana Kotur, mother of a sick child and president of the Association for Rare Diseases of the Republika Srpska (RS).

“I hope he’ll get the drug. Who can put a price on a child’s life? I understand it is expensive but their lives are priceless,” says Kotur, adding that her son’s lung function has significantly improved after using the medication.

The medicine has been available in the RS since September 2022 because the treatment of rare diseases was included in the Health Care Act, after which the Program for Rare Diseases of the RS was adopted. For the procurement of Kaftria and Kalidek, which are used in combination, six million marks are allocated annually from the budget of this entity.

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