Patients with spinal muscular atrophy (SMA) picketed at the building of the Federation Council: they demand that their disease be included in the list of high-cost nosologies (VZN). This will make it possible to finance expensive drugs vital for the treatment of SMA from the federal budget. Now only children under 18 receive medicines from the state free of charge.
Of the patients, 32-year-old Anastasia Glebova was present at the protests in Moscow. She stood up with a sign “I don’t want to die. I want to live and raise my son” and 25-year-old Marina Lisovaya with the slogan “I have SMA. I want to get treated, not wait for death.”
Marina Lisovaya, SMA patient and heroine «New». Photo: Elizaveta Kirpanova/Novaya Gazeta
“My condition is deteriorating every day, it can lead to death. Since I started suing for the medicine, my left hand has practically stopped working, my breathing is very bad, my head falls back more often, ”Lisovaya told Novaya Gazeta.
The picket was also attended by relatives of Petr Vorotyntsev, Nikita Khaletsky, Zarina Badoeva and Dmitry Tishunin, who were diagnosed with SMA.
Nikita Khaletsky's grandmother. Photo: Elizaveta Kirpanova/Novaya Gazeta
In one of the wheelchairs, the participants of the action placed a portrait of the heroine of Novaya Gazeta, 21-year-old Ekaterina Khoroshilova, who was unable to attend the picket in person. She also sued for a medicine and, like Lisovaya, she lost, despite three positive medical reports from federal medical centers. adults.» However, the problem has not been resolved,” Khoroshilova wrote on her Instagram page.
Photo: Elizaveta Kirpanova/Novaya Gazeta
The Krug Dobra state fund was established in January last year at the initiative of the president. He raised the personal income tax by two percent for citizens who earn more than 5 million rubles a year. Only the portion of income that exceeds this amount is subject to the increased rate. These funds go to a fund to support children with rare diseases.
According to the charter, the Circle of Kindness now provides medicines only to children under 18 years of age. For the rest of the patients, drugs are required to be purchased by the regional authorities, but they neglect this, citing a lack of budget. None of the adults with SMA in Moscow receive treatment.
Photo: Elizaveta Kirpanova/Novaya Gazeta
In November, Novaya Gazeta published a special issue dedicated to patients denied treatment by regional authorities. The editors urged the state to solve this problem, and in December Vladimir Putin announced an increase in the age of those who can receive drugs through the Circle of Kindness to 21 years. However, steel patients will still be left without access to medicines.
“My child is 2 years 7 months old and in 2019 the state sent him to die. After that we started fighting for our children. We achieved treatment for them: the highest official in the state intervened manually and gave the command to create a special fund. Now we again want to turn to Vladimir Putin to give the order to the Federation Council, the State Duma, the Ministry of Health and other officials to treat all patients, not only those under 21,” said Alexander Tishunin, the father of a child with SMA.
Alexander Tishunin, father child with SMA. Photo: Elizaveta Kirpanova/Novaya Gazeta
There are two drugs for the treatment of adult patients: Spinraza and Evrisdi. Both are prescribed for life, regardless of the type of SMA and age. Medicines differ in the way they are administered: Spinraza is an injection into the spinal cord. In the first year of treatment, six injections are made, in the next — three. One bottle costs almost 5 million rubles. «Evrisdi» is a syrup that you need to drink daily. Its price is 700 thousand rubles per pack.