Translated material
In the Stavropol region, a girl with SMA was admitted to intensive care. The Ministry of Health did not give her Spinraza, despite the court decision
In the Stavropol Territory, five-month-old Ada Keshishyants was admitted to intensive care with spinal muscular atrophy (SMA), and two weeks ago the court ordered her to be urgently provided with Spinraza.
As friends of the Keshishyants family told Takim Dela, the girl stopped breathing, lost consciousness and is now in serious condition in the intensive care unit of a Kislovodsk hospital.
On April 14, the Leninsky District Court of Stavropol ordered the regional Ministry of Health to provide the child with Spinraza based on vital signs. The girl’s parents, on the advice of a lawyer, also sent a letter to the department asking for clarification of the further algorithm for obtaining the medicine. Officials have still not contacted the family.
According to TD’s interlocutor, in Kislovodsk there is no necessary equipment to maintain a satisfactory condition of the child. Now the family is waiting for the decision of the National Medical Research Center named after. Almazov of the city of St. Petersburg about the possibility of receiving Ada.
The girl’s mother, Maya Keshishyants, recorded a video message to Russian President Vladimir Putin asking for help in getting Spinraza.
View this post on InstagramPublication from Adochka SMA 1 (5 Months) (@ya.ada_) April 26, 2020 at 7:11 PDT
The woman told Taki Dela that the drug was prescribed to her daughter by a medical commission in February. After this, the family turned to the Ministry of Health of the Stavropol Territory to purchase Spinraza. The department responded that standards for providing medical care to children with SMA have not been developed, and there are also no clinical recommendations in accordance with Russian legislation.
Spinraza is not included in any list for preferential distribution, which means there is no reason to purchase the drug at the expense of the regional budget. In addition, not a single medical organization in the Stavropol Territory has experience in using the medicine, the ministry’s response stated.
They tried to include the girl in the early access program to the drug Risdiplam, but to no avail.
The purchase of Spinraza must be paid for by regional authorities, but due to the high cost of the drug, not all patients receive treatment. In mid-April, an application was submitted to include Spinraza on the list of vital and essential drugs. This will regulate the price of the drug and reduce barriers for patients to access therapy.