Sysoyenko: “Patients with rare genetic diseases need government’s help not in words but in deeds”

MP Iryna Sysoyenko from the Samopomich Union faction has appealed to the government yet again asking to implement the laws within the medical reform, namely those concerning orphan diseases (rare diseases). These diseases are genetic, they occur in one person out of two thousand. And today, these patients are overlooked by the state, although they have the same rights as all citizens of Ukraine.

Iryna Sysoyenko notes: “Finally, the state has an unprecedented opportunity to do everything that is necessary for these patients within the framework of the medical reform. First of all, a national strategy must be created.”

So far, out of all the government’s obligations in accordance with the current legislation, all that has been done is determining the list of ailments that belong to orphan ones. In Ukraine, 275 diseases are recognized as rare ones, while in Europe there are 8,000 of them. This does not mean that Ukrainians do not suffer from other diseases, this means that the state does not define them and, accordingly, does not treat them.

This problem can be solved by creating a registry of patients with orphan diseases. Social activists insist on this as well. “We are trying to make orphan patients the state’s priority. These patients are expensive. In European countries, it is the state that takes on the treatment and rehabilitation of such patients. The strategy is to create registries, orphan centres, ensure rehabilitation and diagnostics. We ask to support orphan patients in Ukraine.”

Sysoyenko notes that Ukrainian legislation has regulations that oblige the government to do everything necessary to protect orphan patients. Unfortunately, this is not happening.

The introduction of the law on medical reform should be the step that will provide people with orphan diseases with the necessary medicines, prevention, rehabilitation.

“We insist on the formation of a registry of patients with orphan diseases. This is necessary in order to clearly understand how many people require appropriate treatment today. The registry will shape the need for public funding of the treatment and rehabilitation of such people. We cannot let there be a situation when some citizens with certain diseases receive state aid and protection, while others do not.”

After all, it is not enough when the parliament simply passes laws, it is very important that the government implements these laws.

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