In Krasnoyarsk, a woman with a rare disease is suing the Ministry of Health over a medicine

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A woman with a rare genetic disease lost a court case to doctors for the drug Alglucosidase Alfa.

In the Krasnoyarsk Territory, a woman with the rare Pompe disease is suing the regional health ministry for not being able to get the medicine she needs. The patient has lost the court, but will appeal.

As NGS24.RU writes, the woman was diagnosed with a terrible diagnosis in 2019. Pompe disease is a rare hereditary disorder associated with damage to muscle and nerve cells throughout the body. The disease is incurable, but medication can slow down the process of cell damage and prolong life.

A patient with such a disease is the only one in the Krasnoyarsk Territory. There are 40 such patients in Russia.

Natalia needs to take the drug Alglucosidase Alfa for life – once every two weeks in a hospital. The annual course costs from 8 to 30 million rubles, depending on the patient’s weight.

The court of first instance refused to satisfy the claim against the Ministry of Health of the region.

The regional department commented on the situation with drug supply. The doctors noted that the woman was prescribed a similar drug “Mayozym”, which can also be administered only by an experienced health worker in a hospital setting. The fact is that “Mayozym” has special storage conditions at temperatures from +2 to +8 degrees. That is why a patient cannot get a free prescription for a medicine, since the medicine cannot be used at home.

The Ministry of Health noted that only the MHI fund can allocate money for the annual course – 55 million rubles. Now officials are awaiting a court decision in order to understand where to get money for the patient’s treatment.

“The Ministry of Health has information about the state of health and the therapy prescribed for it, while the issue of purchasing an expensive medicine is being decided. The chief physician of the KGBUZ “Regional Clinical Hospital” was instructed to organize the treatment of the patient after establishing the source of funding by a court decision, ”the Ministry of Health concluded.