State aside: Credit parents buy medicines for their children with the Stistic Fibroza

I'm tired of it. I got three loans in my bank all over this. I can't stand it anymore. I have to stand before the Ministry of Health and see what's gonna happen to him. In the region, ” is easily given away, laments Uka, since he says there are over 20 types of drugs needed for child therapy, adding that only a few solvents are at the University Clinical Centre in Kosovo for the treatment of children with Cestic Fibroza.

There are over 20 different types of drugs. Except for some solvents that have 70 cents in private drugs, they're in the clinic, there's no cure. No nalt-priced medicine is in clinical”, he continues to tell about Schneta Gazette.

“Creon”, “Pulmozine”, “Vitmine Ade”, “Osulfak” are just some of the types of drugs children should be used with Cistic Fibroza. These drugs are also not found mainly in private drugs, while parents are forced to order from Western countries.

Uka, who is a member of the Association for Those With Cestic Fibroza, also shows that for nine years only five times has been supplied to the Paddy Clinic with the drug “Creon”, stating that there is never after the medication at QKU.

For nine years I can guarantee you that “Creon” I got somewhere five times. I've been taking drugs for nine years. There's never been any drugs.

Children with Cystic Fibrosis should use the drug “Creon” after each meal.

Drug insurance is also challenging for Lindita Lett. She's been buying pills for her daughter with a Sistic Fibroza for 16 years. Currently she says she has three bank loans, since most medicines she manages to secure only through loans.

“50 Creona buys 17 euros. 50 Creona chica teme probably falls for a day to drink, example in the morning they eat it along with eight “Creona””, she says.

According to parents, Organization “HOPE” has very often supplied the association for persons with Cistic Fibroza with the “Creon” but not for all ages.
In the organization there are 132 children with fibrosis, each of them should use “Creon” depending on their age.

They say almost similar situations have occurred even when they received three or four donations from foreign countries through the Ministry of Health. They even say that there have been situations when the drugs have very little use time and because of the deadline, they have been forced to throw into the trash.

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For Lindita Lettin, the state of Kosovo is “Home without a home god”, linking it with that no one in the country is in help with providing therapy for their children.
She says within a month she spends 1500 to 1700 euros on drugs for her 16-year-old daughter, but each time depending on the price of drugs in the market.

We don't ask for anything, neither the minister nor the crown. We don't ask for it, in February, as if the homeless house of” is expressed in anger as it shows that the next drug “Pulmosis” has never been able to buy in Kosovo, but every time he has ordered it to countries like Germany, Italy and Turkey.

The cost of a “Pulmozini” has often caught a very high figure, and for its family it is an unaffordable cost.

Until five years ago, I bought 1750 euros for a month, then it fell to 1200, but it has to investigate where it's cheaper in abroad, now I'm getting 500 euros from Turkey. Family members who go to Turkey were told to go buy me a drug store”, she relates.

Supplicating “Pulmozin” is difficult even for Sheriff Uka, he shows that despite requests at the Ministry of Health for supplies with this drug, he says they never considered their demands and that health institutions in the country have never had this kind of grass.

I buy it every six days, six pieces of it. That's 226 euros. I buy 20 grand for a month or two, but I'm buying it for six days. The one with 30 pounds couldn't buy. There's never after Pulmosis in Kosovo”, he explains.

In addition, he says that the day before, he bought vitamin Ade in many of the 10 euros, sincepyia was not supplied. He adds that during a meeting with Health Ministry Secretary-General Naim Bardiqi, they have received promises that the problem with the lack of drugs will be solved by March 1st this year, “on March 1st 2022 we have been told this job is done. It's April that's going to go to May, and he's going to be pissed off.

Another problem, according to him, is services in health institutions in the country, stressing that for an analysis of bacteria, he is obliged to wait up to two weeks because such a service cannot be done more quickly at microbiology at the National Public Health Institute. The delay in receiving results of tests, he says, increases the chances that his child will be affected by another bacteria in the body and his identification will be delayed.

Even parent Ghani Kryeziu has the same problem as two other parents.

Kryeziu cares for his 12-year-old son diagnosed with the same disease. It shows that the drug “Pulmosis” is recently ordering it from Western countries with a total of 100 euros, while it says that there are times when it is forced to buy 150 euros, depending on market prices.

A piece of (Pulmosis) is in 30 days, now five pieces per five months, which is 1250 euros within five months because it is one month. Another order therapy over 2 thousand euros, but the name I'm not remembering from Germany has brought me”, he confessed.

He has a complaint for the current and past government. According to him, politicians who were in opposition have sent criticism of the position, but the moment they are in charge of the state do not deal with this category of children at all. Even that health ministry promises are called “bose”.

The Ministry of Health is giving us promises, but empty promises. (Fatmire) He's been in the opposition while he's a doctor and a loud doctor, he's in a position now he's never heard his voice. Armmendi Zemaj has been in the position he hasn't spoken yet he's in the opposition. When they're in position, they're not talking when they're in the opposition. But they're all empty”, he expresses concern.

By profession Kryeziu is an educator, and with a monthly teaching salary he says it is unaffordable to cover all expenses.
He shows that within a month he spends a minimum of over a thousand euros, but if his son's state of health worsens the monthly cost increases.

“A thousand to 1500 after normal. In a bad schedule that was two or three years ago, I've been going up to 2,000 euros a minimum month. An injection of 12 to 13 euros. Therapy has begun to stretch too much, it's unaffordable”, Kryeziu says.

“Health Ministry settings”

The Health Ministry's lack of therapy for children with Cestic Fibroza linked it to the COVID-19 pandemic. Although the country has been facing coronavirus for two years now, the ministry says that a additional “an additional problem has been that during the COVID-19 pandemic, donors have also had difficulty providing therapy, due to various restrictions during that time”.

On the other hand, parents whose children are diagnosed with fibrosis for more than 10 years show that during these four to five years they have received some of the drugs through donations.

The health ministry's answers also say that the high cost of medicines for this category of patients has made it difficult to supply health institutions with drugs.

“Securation of therapy for patients with Fibroze Cestics has been from MSh through donors and a portion from SKKUK. But because of expensive therapy, it has not been a regular supply each time and has satisfied all the needs, so this has also contributed to the expenses of the family”, the MW's response to Schneta Journal says.

From the ministers away, they say that in order to secure the drugs for this category, they have started to launch procedures for the first time, and except for the “Panchliapaza” on this list the product “Dornase Alpha” will be included.

According to the ministry “, the end of this problem” will come at the end of this month or early next month, as they say it will provide therapy for patients with the Cestic Fibroza.

“in this therapy except for “Pancreliapaza”, also included a product from the component list of the essential list, “Dornase Alpha”. According to information, the procedures are under way and are expected to ensure that at the end of this month or early next month, therapy for patients with Fibroze Cestic” is being provided, it is now said.

The newspaper Shneta has also requested clarification from the MS why the government manages to provide therapy for this category of patients through the annual budget, but the same have not responded.

Kosovo saw department for dealing with Stistic Fibroza children

The lack of drugs and their high costs are not just the problem of treating children with mystic Fibroza. This category of patients has no special department for treating the disease.
“Vend -residence” of their therapy intake is just the Children's Clinic or the Paddy at the University Clinical Centre in Kosovo.

According to the chief of this department, Drita Telaku Qosja, there are only two children in this currently laid clinic with FC, since it is not known how many children are checked in the clinic overnight.

As far as supplies are concerned, it explains that they are supplied with “Creon” and vitamins from donations, but the amount currently found in the clinic is insufficient.

We've got “Creon” and vitamins from donations. A long time ago we refused a donation, now we have a small amount of “Creon” that we're trying to proportionally share”, she suggested about Schneta Gazette.

DWhat disease is pestic fibroza?

The FC accessed the list of rare diseases.

“The FC is a genetic disease. The disease barrier is both parents who as carriers are not sick” says pediatric specialist Drita Telaku Qosja.

She explains that the child inherits the disease if he receives the sick genes from both parents.

These children have frequent problems with respiratory infections, have food digestive problems, and in time the disease affects other” systems, they suggested further.

She says Fibroza Cestic is a hereditary disease and is very important early diagnosis. /Gazzeta Shneta/