“Butterfly children” suffer from a disease, which makes their skin easily vulnerable, fragile like a butterfly wing. The usual routines like walking, eating or playing lead to form blisters (vesication) similar to serious burning. Sometimes the lack of skin on their bodies exceeds 50%.
The pain could be soothed if the children are bandaged up with special dressing, which doesn’t stick. Vitally important are the antibiotic ointments, protecting against infections. This way the monthly amount goes beyond 2,000 lv. The only hope for the butterfly children is these expenses to become a state responsibility.
In the beginning of October 2012 a major social campaign to help people with Epidermolysis bullosa hereditaria (EBH) got started. Three organizations – the Bulgarian Helzinki Commettee, DEBRA Bulgaria and the Center for Health Rights Protection asked for an equal access to health protection of people with ЕBH. The three organizations sent an offer to the Ministry of Health for including Bulgaria in the list at Decree № 38 for determination the list of illnesses for whose home treatment the National Health Fund (NHF) pays medicines, medical products of dietary foods for specific medical conditions completely or partly.
Such letters have been repeatedly sent in 2011 and the beginning of 2012, but until now the Ministry of Health has taken no measures to solve the problem. On 24 October people campaigning for adequate health care in Bulgaria, received a consecutive refusal, since according the Health Insurance Act the decree could be considered only once a year. However the decree is due to be considered in February 2013 with hope for the long-expected including the decease, for which the organizations have insisted for a long time.
According to the organizations as well as the Ombudsman of Republic Bulgaria, the excluding of Epidermolysis bullosa hereditaria from the list of illnesses which domestic cure is covered by NHF, leads to an unequal treatment of the patients with that illness and is an immediate discrimination. They emphasize that even in 2010 the Committee against Discrimination recommended the Prime Minister to take due measures so that the health legislation guarantees the same rights for the patients, suffering from rare illnesses.
In Bulgaria the patients with EBH are about one hundred. Many of them are children, including little Yana Kolchagova, who BHK met, to understand how exactly passes a day for a child with EBH.
Thanks to the photographs published in the media and the following interest bTV streamed an interview in its morning program. In front of bTV Magi Abagieva, a member of the managing board of DEBRA (a patients’ organization protecting the rights of people with similar illness – e.n.) explained there has been a struggle the treatment against that illness to be covered by the state.
The main problem is the supply with bandages, which don’t stick, and their setting, which sometimes takes a few hours a day. The protest of patients affected by the illness, their relatives and its mentioning in the news at the end of January obviously had their positive effect.
Soon after the explanation of Magi Abagieva on air the Health Minister, responsible for the decision Epidermolysis bullosa hereditaria to get enlisted in Regulation 38 of the Health Insurance Fund in question, spoke. Desislava Atanasova announced the the traetment of the ilness will be covered by the Fund in 2013.