Today mothers and children with Cystic fibrosis offered the officials of\u00a0the Ministry of\u00a0Health to\u00a0take 30\u00a0pills at\u00a0once. That\u2019s the quantity of\u00a0pills a\u00a0sick child should take according to\u00a0the new tender announcement, posted on\u00a0the Ministry of\u00a0Health website.<\/p>\n
\u00abEarlier, the child had to\u00a0take 7\u00a0pills a\u00a0day to\u00a0maintain normal health condition. According to\u00a0new inventions of\u00a0the Ministry of\u00a0Health\u00a0\u2014 up\u00a0to\u00a030<\/em>,\u00a0\u2014 says Irina Gavrisheva<\/strong>, Chairman of\u00a0the Fund \u201eHappy Child\u201c<\/strong>\u00a0\u2014 The tender offer is\u00a0written in\u00a0a\u00a0way that only one manufacturer will win. It\u00a0produces the low-grade cheap generic drugs. The tender conditions were deliberately designed in\u00a0favour of\u00a0this manufacturer. So\u00a0today we\u00a0ask every official who wrote the new \u201enecessary\u201c conditions of\u00a0the tender, to\u00a0try to\u00a0take the same amount of\u00a0pills a\u00a0little child have to\u00a0take.\u00bb<\/em><\/p>\n Throughout the civilized world the cystic fibrosis patients use only drugs tested clinically with proven effectiveness for this particular group of\u00a0patients, such as\u00a0Creon, Zenpep, Pankreasa etc. Now Creon is\u00a0the only enzyme medication approved by\u00a0FDA (Office of\u00a0the Food and Drug Administration) registered in\u00a0Ukraine. It\u00a0was recommended by\u00a0the treatment protocol of\u00a0cystic fibrosis, approved by\u00a0the Cystic Fibrosis Foundation.<\/p>\n \u00abWhen a\u00a0mother of\u00a0a\u00a0child with cystic fibrosis addressed\u00a0us, we\u00a0began our investigation. It\u00a0turned out that while both Creon and generic drug content the same substances, their combinations work differently for the patient, especially for the children.<\/em> \u2014\u00a0States Olga Stefanyshina<\/strong>, the Executive Director of\u00a0the patients organization UCAB<\/strong>. \u2014\u00a0That\u2019s why the Cystic Fibrosis Foundation insists that using of\u00a0generic drugs is\u00a0inacceptable for treatment of\u00a0this disease. Moreover, the Russian Center for cystic fibrosis also confirmed the inadmissibility of\u00a0the generic treatment of\u00a0children with cystic fibrosis. It\u00a0means that in\u00a0Ukraine officials simply conduct experiments on\u00a0the sick children, buying medicines, which actually ruin their health\u00bb<\/em>,\u00a0\u2014 adds Olga<\/strong>.<\/p>\n The average life expectancy of\u00a0people with cystic fibrosis in\u00a0the world is\u00a036\u00a0years, sometimes reaching 48\u00a0years. In\u00a0Ukraine only 1\u00a0in\u00a010\u00a0children reach the age of\u00a018.<\/p>\n In\u00a02012, Ministry of\u00a0Health of\u00a0Ukraine bought cheaper generic (substitute)\u00a0\u2014 Kreazim. Its efficacy and safety for patients with cystic fibrosis has not been proven. As\u00a0a\u00a0consequence, most of\u00a0the children were not able to\u00a0take this drug. They suffered from a\u00a0lot of\u00a0side effects which led to\u00a0the rapid deterioration of\u00a0health.<\/p>\n \u00abI\u00a0refuse to\u00a0risk the health of\u00a0my\u00a0only child, giving her the drugs that haven\u2019t been approved for this children. I\u00a0know that all mothers of\u00a0children with cystic fibrosis complain on\u00a0many side effects after taking Kreazim. So\u00a0I\u00a0did not even want to\u00a0try. My\u00a0Dasha takes Creon since birth. Her medical history indicates that Creon must be\u00a0taken permanently. My\u00a0child is\u00a0not a\u00a0guinea pig for the Ministry of\u00a0Health! \u00bb<\/em>\u00a0\u2014 Resents Julia, Mom of\u00a08-years old Dasha.<\/p>\n Unfortunately, all these facts were ignored by\u00a0the Ministry of\u00a0Health of\u00a0Ukraine. Tender was announced without the participation of\u00a0patient organizations, contrary to\u00a0the promise of\u00a0Ministry. In\u00a02013 the state purchase of\u00a0Kreazim to\u00a0the sum of\u00a0UAH 931\u00a0000\u00a0is planned.\u00a0800 young Ukrainians will have to\u00a0take 30\u00a0tablets daily and be\u00a0taken into the hospital because of\u00a0the corrupt practices in\u00a0the Ministry of\u00a0Health. Most parents of\u00a0these children have already refused to\u00a0use this drug. This means a\u00a0waste of\u00a0state funds of\u00a0Ukraine.<\/p>\n On\u00a0March\u00a013, 2013 the meeting of\u00a0the Tender Committee is\u00a0scheduled, on\u00a0which they would chose the drug to\u00a0be\u00a0bought by\u00a0the Ministry of\u00a0Health. So\u00a0today, at\u00a0the end of\u00a0the press-conference, the parents of\u00a0children with cystic fibrosis appealed to\u00a0the Minister of\u00a0Health to\u00a0buy Creon\u00a0\u2014 the only drug that can help their children.<\/p>\n Mothers of\u00a0sick children signed an\u00a0official letter for Raisa Bohatyryova directly at\u00a0the press conference and submitted it\u00a0to\u00a0the Ministry of\u00a0Health through the officials present at\u00a0the event.<\/p>\n Information:<\/strong><\/p>\n Cystic fibrosis is\u00a0a\u00a0genetic disorder that is\u00a0manifested at\u00a0birth, causing extreme sufferings to\u00a0the child. For the lungs and respiratory tract: persistent bronchitis, pneumonia. For the digestive system: the food is\u00a0not digested, children do\u00a0not gain weight, suffer from abdominal pain. These children are born of\u00a0perfectly healthy parents who are simply carriers of\u00a0cystic fibrosis gene.<\/p>\n In\u00a0Ukraine there are about 800 cystic fibrosis patients, most of\u00a0them are children. Patients with cystic fibrosis have to\u00a0receive the replacement enzyme therapy for life to\u00a0compensate the function of\u00a0pancreas. Funds that are allocated by\u00a0the state for the treatment of\u00a0these children cover less than\u00a012% of\u00a0the real needs.<\/p><\/blockquote>\n","protected":false},"excerpt":{"rendered":" Today mothers and children with Cystic fibrosis offered the officials of\u00a0the Ministry of\u00a0Health to\u00a0take 30\u00a0pills at\u00a0once. That\u2019s the quantity of\u00a0pills a\u00a0sick child should take according to\u00a0the new tender announcement, posted on\u00a0the Ministry of\u00a0Health website.<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_analysis_target_kw":"","footnotes":""},"categories":[140],"tags":[],"class_list":["post-11612","post","type-post","status-publish","format-standard","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/11612","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/comments?post=11612"}],"version-history":[{"count":1,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/11612\/revisions"}],"predecessor-version":[{"id":11615,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/11612\/revisions\/11615"}],"wp:attachment":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/media?parent=11612"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/categories?post=11612"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/tags?post=11612"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}