In Russia, the only adult patient with an orphan disease Ada Kotkin-the Ministry of Health refused to buy a medicine for two years

In Novosibirsk, 23-year-old Tatyana Drozdova with a rare genetic disease died. She sued the Ministry of Health due to the prescribed treatment, but could not get it, they write Komsomolskaya Pravda andNGS.ru.

Drozdova was born with Ada Ktkin-heavy combined immune deficiency due to adenosinezaminase deficiency. The disadvantage of this enzyme leads to the accumulation of a toxic compound in the lymphocytes that destroys DNA and creates the conditions for severe immunodeficiency. Despite the disease, she was able to graduate from school and enter the medical university. She became the only adult in Russia with such a diagnosis.

In 2023, doctors of the Novosibirsk Research Institute of Fundamental and Clinical Immunology gathered a consultation and prescribed the drug Elapegademase-Ivir (Revcovi) worth 50 million rubles a month. The same recommendation was given in the Federal State Budgetary Institution “Institute of Experimental Medicine” in St. Petersburg. The Circle of Good charity fund in Russia can be provided with this drug, but the program in this fund only works for those under the age of 19.

The regional Ministry of Health refused to purchase a medicine. Drozdova went to court and won it. But for two years, I never received treatment - the department appealed. In May, her condition worsened, she moved severe pneumonia twice and fell into a coma.

According to NGS.ru, this is not the first tragedy in the Drozd family: from the same disease, combined immunodeficiency, Tatyana's younger sister died at the age of five.

People with rare difficult diagnoses in Russia have to sue the Ministry of Health for the laid out expensive medicines. In the Sverdlovsk region, Dmitry and Yana Bakhtina, the parents of the child with spinal muscle atrophy (SMA), had been submitted to the regional department for the medicine for three years, the annual course of treatment of which is 14 million rubles. Bakhtins repeatedly arranged pickets, demanding that the son provide medicine: in Yekaterinburg, on Red Square in Moscow, at the House of the Government of the Russian Federation, at the administration of the governor of the Sverdlovsk region and at the apparatus of the Presidential Presidential President in the Urals Federal District before the arrival of Vladimir Putin.

In 2022, the Putin Foundation "Circle of Good" complained to the UN of problems when purchasing medicines. But other funds brought medicines for their wards to Russia, The Insider found out . The BBC wrote that, although the Circle of Good and received the right to buy unregistered medicines, it takes this opportunity extremely limited.