October 7, 2015 – Public union “Rare diseases of Ukraine” held an action “Life, which I won’t live,” appealing to the Department of Finance in Ukraine to provide patients with rare diseases with required treatment in 2016, as guaranteed to them by law. In particular, the press release of the organization states: “Today the problem of rare diseases is the focus of many countries, including European, due to increasing of pathologies prevalence. Ukraine is not exception – about 5% of the population has a rare disease. These diseases require uninterrupted lifelong treatment, but most drugs for it are expensive. In developed countries the state supports everyone without excluding patients with rare disease and provides them with the necessary drugs, because even a small break in the therapy leads to disability and slow death. Without state order of medicines patients access to treatment will be very limited, because not every pharmaceutical company is ready to enter the market, which consists of several persons.

January 1, 2015 the Law on rare diseases № 1213-VII, under which the state must provide for life all patients with rare diseases (both children and adults) with free and uninterrupted treatment from the state budget came into force in Ukraine. Developed by the DOH in Ukraine the draft of the State Budget for 2016 clearly indicates a real need for medicines for patients with rare diseases, including Gaucher disease, mucopolysaccharidosis, mucoviscidosis, phenylketonuria, epidermolysis bullosa and pulmonary hypertension.

However, the Department of Finance in Ukraine didn’t include into a budget request of the draft of Law “On the State Budget of Ukraine for 2016” expenses provided by the DOH in Ukraine for vital medicines for patients with rare diseases. Department of Finance refused to allocate funds of the budget of 2016 for such nosologies, as pulmonary hypertension and epidermolysis bullosa.

“The life of patients with rare diseases depends entirely on the state, because without the support patients and their families are not able to provide even the minimum amount of medicines. Following the tender procedures of 2015 within the dedicated funding we are provided with medicines only for 3 months. Given the amount of money allocated in 2016 to provide patients with rare diseases with treatment, it is safe to say that the state, instead of giving patients a chance for a full life, takes it away from them. In 2016 the Ukrainians with rare diseases instead of vital therapy, may get only mourning ribbon. Therefore, we appeal to the Department of Finance with a request not to take away the lives of our children and ensure them treatment without which they will die “- commented Tatiana Kulesha, head of the Public Union “Rare diseases of Ukraine.”