Mother of 2-year-old girl sues healthcare ministry over treatment abroad

Minsk's Maskouski District Court has heard Maria Zvanko’s lawsuit against the Ministry of Health. 2-year-old Vera is suffering from spinal muscular atrophy. She needs to get treatment abroad, her parents believe. They only medicine that can theoretically save Vera is Spinraza.  An annual course of treatment costs $700 thousand. Spinraza is not registered and cannot be used in Belarus.

Lawyer Dzmitry Layeuski solicited for adducing documents on Spinraza in English and their certified translations as well as the copy of Maria Zvanko’s appeal to the Ministry of Health (Vera’s mother asked the Ministry about the ways to be sent abroad for treatment and about the work being done to start using Spinraza to help children affected by spinal muscular atrophy) on December 12.

Vera’s parents can buy Spinraza at their own or at somebody else’s expense (if it does not contradict the law), the commission of the Ministry of Health decided. The family has applied for financial assistance to several organizations.

The reply of Minsk City Executive Committee is among the adduced documents. Maria Zvanko’s appeal will be considered if the Ministry of Health admits that Vera Zvanko needs Spinraza, officials replied.

— We are not asking for money. We need the Ministry of Health to admit that Vera needs to get Spinraza, –  the lawyer said.

Legal disputes also took place on December 12.

— What is the matter of the dispute and the reason for taking legal action? – Layeuski asked. – It is important since the representative of the Ministry keeps highlighting financial issues and the price of the medicine. Yet, the case is not about money or some medical error. Nobody has refused Vera Zvanko because of the lack of funds. We are trying to appeal the administrative procedure that let the Ministry of Health refute the fact that the child is in need of the medicine without foundation. The decision of the commission should be announced illegal.

Spinraza is not mentioned in both decisions of the commission of the Ministry of Health although Maria Zvanko had mentioned it in her appeal. At the same time, the representative of the Ministry of Health and witnesses mentioned the medicine a lot in court. “The decision pronounced by the commission on October 10 does not even contain the name of the disease (spinal muscular atrophy) discussed at the hearing,” Layeuski noted.

Judge Palina Antsipchyk dismissed the complaint lodged by Vera’s mother at the hearing on December 13.

— Our complaint has been dismissed, – the lawyer said. The reason was not explained so we do not know what the court’s decision is based on. Yet, we will definitely appeal the decision. We are sure that our demands are absolutely legal and fair from the legal, state and humane points of view.

Maria Zvanko is trying to prove that her 2-year-old daughter needs to get medical assistance abroad. Vera is suffering from a rare genetic disease – spinal muscular atrophy (type II). There is no medicine that could halt the disease progression in Belarus.

The girl’s parents asked the Ministry of Health to send their daughter abroad to get treatment. However, the course is very expensive – $89 thousand per injection. The girl needs six injections a year. The officials decided that the treatment was inexpedient. The commission refused the parents’ request twice – on August 17 and October 10.