The state does not provide essential list medicine to patients with cystic fibrosis

Descriptive Text

Vitamin Adek, which is a supporting product for the normal functioning of organs in patients with cystic fibrosis, has been missing from the drug stock since 2019, when it was included in the essential list. In its absence, parents say that they are forced to provide this therapy for their children abroad, at a high financial cost. The Ministry of Health admitted that there is a shortage

Vitamin Adek, which is used in patients with cystic fibrosis, has been missing from the stock of medical drugs for five years, since it has been part of the essential drug list.

In its absence, parents say that they are forced to provide this daily therapy for children themselves and abroad, at a cost of 50 to 70 euros for a pack of sixty capsules.

Vlora Vatovci, whose ten-year-old daughter has been diagnosed with cystic fibrosis, says that providing the drug causes a great financial burden.

"It is extremely important, especially for children with Cystic Fibrosis, because it is a vitamin that helps them absorb fats, as it is already known that they do not have a functioning pancreas. They get these foods through enzymes, that is, they have to use enzymes to digest the food. I provide 'Adek' in America, through my sister, where a package of 'Adek' costs 50 euros in America, while in Kosovo there are cases where they are buying 60-70 euros. I don't know the exact price, because I didn't buy it in Kosovo", she said.

In addition to the high monthly cost, Vatovci says that the race against time for his insurance causes great concern.

"Sometimes the child needs that therapy, maybe it's urgent therapy. It comes to us after a week, 10 days, we can't take it immediately when we want," Vatovci emphasized.

The Ministry of Health is responsible for providing all necessary therapy for patients with cystic fibrosis. In this institution, they admitted that the product is in short supply, but they did not give a time limit for when the supply will be able to start.

"Regarding the Adek product, we inform you that procurement procedures have been developed, but there have been no offers from economic operators. We are currently in the phase of re-initiating procurement activities, with the aim of securing this product", says a response from the Ministry.

Based on data from the University Clinical Hospital Service, there are 122 patients diagnosed with cystic fibrosis who need this vitamin. But neither in SHSKUK nor in the Pediatric Clinic did they say if they face a shortage of the product.

"The Ministry of Health is the institution that provides therapy according to the latest Guidelines for this disease. It includes Creone Caps, inhalations with Dornase Alfa (Pulmozyme), inhalations with hypertonic solution 3% or 6%, vitamin supplements of the ADEK group, regular physical and supportive therapy. The dosage is individual for each patient and is determined on the basis of body mass", says the answer of SHSKUK.

Cystic fibrosis is a rare and hereditary disease that causes major problems in the lungs, intestines, liver and pancreas.