Today mothers and children with Cystic fibrosis offered the officials of the Ministry of Health to take 30 pills at once. That’s the quantity of pills a sick child should take according to the new tender announcement, posted on the Ministry of Health website.
«Earlier, the child had to take 7 pills a day to maintain normal health condition. According to new inventions of the Ministry of Health — up to 30, — says Irina Gavrisheva, Chairman of the Fund „Happy Child“ — The tender offer is written in a way that only one manufacturer will win. It produces the low-grade cheap generic drugs. The tender conditions were deliberately designed in favour of this manufacturer. So today we ask every official who wrote the new „necessary“ conditions of the tender, to try to take the same amount of pills a little child have to take.»
Throughout the civilized world the cystic fibrosis patients use only drugs tested clinically with proven effectiveness for this particular group of patients, such as Creon, Zenpep, Pankreasa etc. Now Creon is the only enzyme medication approved by FDA (Office of the Food and Drug Administration) registered in Ukraine. It was recommended by the treatment protocol of cystic fibrosis, approved by the Cystic Fibrosis Foundation.
«When a mother of a child with cystic fibrosis addressed us, we began our investigation. It turned out that while both Creon and generic drug content the same substances, their combinations work differently for the patient, especially for the children. — States Olga Stefanyshina, the Executive Director of the patients organization UCAB. — That’s why the Cystic Fibrosis Foundation insists that using of generic drugs is inacceptable for treatment of this disease. Moreover, the Russian Center for cystic fibrosis also confirmed the inadmissibility of the generic treatment of children with cystic fibrosis. It means that in Ukraine officials simply conduct experiments on the sick children, buying medicines, which actually ruin their health», — adds Olga.
The average life expectancy of people with cystic fibrosis in the world is 36 years, sometimes reaching 48 years. In Ukraine only 1 in 10 children reach the age of 18.
In 2012, Ministry of Health of Ukraine bought cheaper generic (substitute) — Kreazim. Its efficacy and safety for patients with cystic fibrosis has not been proven. As a consequence, most of the children were not able to take this drug. They suffered from a lot of side effects which led to the rapid deterioration of health.
«I refuse to risk the health of my only child, giving her the drugs that haven’t been approved for this children. I know that all mothers of children with cystic fibrosis complain on many side effects after taking Kreazim. So I did not even want to try. My Dasha takes Creon since birth. Her medical history indicates that Creon must be taken permanently. My child is not a guinea pig for the Ministry of Health! » — Resents Julia, Mom of 8-years old Dasha.
Unfortunately, all these facts were ignored by the Ministry of Health of Ukraine. Tender was announced without the participation of patient organizations, contrary to the promise of Ministry. In 2013 the state purchase of Kreazim to the sum of UAH 931 000 is planned. 800 young Ukrainians will have to take 30 tablets daily and be taken into the hospital because of the corrupt practices in the Ministry of Health. Most parents of these children have already refused to use this drug. This means a waste of state funds of Ukraine.
On March 13, 2013 the meeting of the Tender Committee is scheduled, on which they would chose the drug to be bought by the Ministry of Health. So today, at the end of the press-conference, the parents of children with cystic fibrosis appealed to the Minister of Health to buy Creon — the only drug that can help their children.
Mothers of sick children signed an official letter for Raisa Bohatyryova directly at the press conference and submitted it to the Ministry of Health through the officials present at the event.
[dt_quote type=”blockquote” font_size=”normal” animation=”none” background=”plain”]
Cystic fibrosis is a genetic disorder that is manifested at birth, causing extreme sufferings to the child. For the lungs and respiratory tract: persistent bronchitis, pneumonia. For the digestive system: the food is not digested, children do not gain weight, suffer from abdominal pain. These children are born of perfectly healthy parents who are simply carriers of cystic fibrosis gene.
In Ukraine there are about 800 cystic fibrosis patients, most of them are children. Patients with cystic fibrosis have to receive the replacement enzyme therapy for life to compensate the function of pancreas. Funds that are allocated by the state for the treatment of these children cover less than 12% of the real needs.
[dt_gap height=”20″ /]
[gview file=”/2013/03/press-release-Cystic-fibrosis.docx” save=”1″]
[dt_gap height=”20″ /]