The story began in\u00a0January 2013 when the mother of\u00a018-months old Vovchik from a\u00a0small town in\u00a0the Dnepropetrovsk region asked our organization for help.<\/p>\n
Little boy was suffering from cystic fibrosis\u00a0\u2014 a\u00a0rare genetic disorder that results in\u00a0a\u00a0gradual fading of\u00a0the functions of\u00a0the lungs and pancreas. Patients with cystic fibrosis, mostly they are children, constantly have to\u00a0take enzymes to\u00a0digest food. Suddenly, the child\u2019s condition began to\u00a0deteriorate because of\u00a0the drugs that were given to\u00a0him in\u00a0the hospital. Those drugs that he\u00a0received at\u00a0the public expense.<\/p>\n
Worldwide for the treatment of\u00a0these children it\u00a0is\u00a0strictly forbidden to\u00a0use any substitutes or\u00a0generic drugs. However, the domestic enzyme drug Kreazim was procured at\u00a0the cost state budget of\u00a0Ukraine. According to\u00a0the bidding law the Ministry of\u00a0Health should procure the cheaper, rather than most effective drug on\u00a0the tender. Parents and activists raised the alarm at\u00a0the fact that there had been severe adverse reactions and side effects in\u00a0children. In\u00a0addition, it\u00a0turned out that the dosage of\u00a0the active substance is\u00a0extremely low and the children had to\u00a0take up\u00a0to\u00a030\u00a0pills a\u00a0day!<\/p>\n
So, a\u00a0press conference was organized with the participation of\u00a0UCAB and CF \u2018Happy Child\u2019, where parents and activists met with representatives of\u00a0the Ministry of\u00a0Health and appealed to\u00a0the Minister of\u00a0Health Raisa Bohatyryova asking her not to\u00a0procure substandard drugs by\u00a0sending her a\u00a0formal letter. At\u00a0this press conference 9-year old girl Darinka showed that the number of\u00a0pills that she needs to\u00a0take daily, do\u00a0not fit in\u00a0her little hands. And the deadlock was broken.<\/p>\n
A\u00a0few months after the press conference, UCAB continued negotiations with representatives of\u00a0the Ministry of\u00a0Health and manufacturers of\u00a0Creon\u00a0\u2014 the original drug, which effectively helps sick children, in\u00a0order to\u00a0convince them to\u00a0reduce the price for participation in\u00a0the tender. The price was reduced. Thanks to\u00a0the joint efforts of\u00a0the parents and patient organizations the original drug Creon won the tender. It\u00a0was procured and transferred to\u00a0hospitals throughout Ukraine.<\/p>\n
In\u00a0addition, a\u00a0specially created working group at\u00a0the Ministry of\u00a0Health obliged the manufacturer of\u00a0the generic drug Kreazim to\u00a0remove the indication \u2018cystic fibrosis\u2019 from the instruction until the results of\u00a0clinical trials are ready. In\u00a0September, 2013, the Decree of\u00a0Ministry of\u00a0Health about the re-registration of\u00a0medicines was issued, which excluded the indication of \u2018cystic fibrosis\u2019 in\u00a0the manual. Now the procurement of\u00a0the drug \u2018Kreazim\u2019 for children with cystic fibrosis is\u00a0impossible.<\/p>\n
Throughout 2013, the representatives of\u00a0the partner organization UCAB and CF \u2018Happy Child\u2019 who took care of\u00a0children with cystic fibrosis monitored the tender for the purchase of\u00a0medicines. Due to\u00a0the orderly functioning of\u00a0patients and attract members of\u00a0the press, which led investigative journalism, they managed to\u00a0convince the Ministry of\u00a0Health that the activists did not back off until the kids do\u00a0not get life-saving drugs.
\nThis is\u00a0an\u00a0unprecedented victory of\u00a0patients. In\u00a0our country, few dare to\u00a0defend their rights, joining the battle with the state machine. Thanks to\u00a0the initiative of\u00a0the mothers of\u00a0sick children and the experience of\u00a0UCAB for interaction with public authorities such tremendous systemic change was achieved. In\u00a0addition, the advocacy work is\u00a0being continued to\u00a0increase funding for the procurement of\u00a0medicines at\u00a0public expense for this category of\u00a0children.<\/p>\n
In Ukraine, about 800 children suffer from cystic fibrosis and are in need of constant medical treatment with enzymes. Unfortunately, the state provides only part of the need for drugs, providing the annual budget of UAH 800-900 thousand. In Ukraine, due to substandard care only 1 in 10 children with this diagnosis live up to 18 years. While in Europe, the average life span of these patients is 43 years.<\/p><\/blockquote>\n","protected":false},"excerpt":{"rendered":"
The story began in\u00a0January 2013 when the mother of\u00a018-months old Vovchik from a\u00a0small town in\u00a0the Dnepropetrovsk region asked our organization for help. Little boy was suffering from cystic fibrosis\u00a0\u2014 a\u00a0rare genetic disorder that results in\u00a0a\u00a0gradual fading of\u00a0the functions of\u00a0the lungs and pancreas. Patients with cystic fibrosis, mostly they are children, constantly have to\u00a0take enzymes to\u00a0digest […]<\/p>\n","protected":false},"author":2,"featured_media":3276,"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":[170],"tags":[],"class_list":["post-11026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-achievements"],"_links":{"self":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/11026","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=11026"}],"version-history":[{"count":3,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/11026\/revisions"}],"predecessor-version":[{"id":11030,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/11026\/revisions\/11030"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/media\/3276"}],"wp:attachment":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/media?parent=11026"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/categories?post=11026"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/tags?post=11026"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}