The Ministry of Health obliged domestic manufacturers of the drug «Kreazim» to exclude the diagnosis «cystic fibrosis» from the diseases listed in the instructions for the drug. Now children with this disease cannot be treated with this drug, and more effective drugs for this disease will be procured at the expense of the state budget.
In addition, the Ministry of Health obliged the manufacturers to make clinical research of this drug and prove its efficiency in cystic fibrosis treatment. Until that, this drug will not be procured by the state budget and no doctor will be able to recommend it to patients with this disease. «This is a huge victory for the patients, — says Olga Stefanishina from the patients’ organization UCAB. — In fact, the manufacturer of the drug — which had previously been purchased by MoH and which did not treat, but even harmed children — would not write in the instructions that the drug treats cystic fibrosis and therefore couldn’t apply to the tenders.»
It should be recalled that last year, the Ministry of Health procured the drug «Kreazim» for the treatment of children with cystic fibrosis, as it appeared to be the cheapest and complied with the active ingredient required in the tender announcement. It is a biological drug that, in fact, replaces enzymes that are not produced in children with this diagnosis. This purchase by the Ministry of Health resulted in tremendous resistance from the public and parents of young patients because the use of generics (the cheap substitutes) for the treatment of children with cystic fibrosis is not recommended worldwide for their possible side effects. In Ukraine, due to the very low price and a similar composition, the Ministry of Health had purchased these drugs.
Registration certificate for this drug was issued in 2005, taking into account the main active ingredient — pancreatin — which is effective in treatment for many diseases. However, once MoH has received complaints from patients, the special working group examined this issue and came to the conclusion that the effect of the active ingredient may vary for rare diseases such as cystic fibrosis. Therefore the working group recommended the manufacturer to exclude this disease from the instruction. Today, the manufacturer agreed to follow this recommendation.
Parents of young patients rejoiced over such a solution being those who had written letters to the Ministry of Health requesting high-quality drugs for their children. «After my child was first given „Kreazim“ in the hospital, I began to give it to her. But weight loss, abdominal pain and other symptoms made it clear that there was something wrong with the drug, — says the mother of four-year-old Daria. — So later I began to just throw „Kreazim“, given for free, in the trash-bin. And then I refused even to receive it in the clinic altogether. I just went to the drugstore and bought a quality drug. But it’s a lot of money, while I don’t have enough even for food. I’m glad now that my child will have a chance to get normal drugs from the state.»
We would like to note that today there are about 800 people in Ukraine suffering from this disease. Almost all of the patients are children, because in Ukraine, due to substandard care, only 1 in 10 children with this diagnosis lives to the age of 18. In Europe the average life expectancy of these patients is 43 years. Cystic fibrosis is a rare genetic disease that causes serious disturbances in the work of internal organs, especially the lungs and digestive system. The function of the pancreas gradually fades away, so nutrients from food are not absorbed, resulting in a sick child who cannot fully grow and develop.
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