Circle of Good will urgently purchase Spinraza for four children with SMA

The expert council of the Circle of Good Foundation decided to urgently purchase the drug Spinraza for four patients with spinal muscular atrophy (SMA) who immediately need help. This was reported on the organization's Facebook page.

Four patients will receive the drug - from Moscow, the Komi Republic, Krasnodar Territory and Arkhangelsk Region. This decision was made at an emergency meeting of the fund’s expert council.

“[Children] have urgent indications for starting treatment, and you can’t wait at all,” Olga Germanenko, director of the SMA Families Foundation, who is on the expert council of the Circle of Good Foundation, commented to TD.

Updated February 19 at 10:15 am. Information about the urgent purchase of Spinraza for four children with SMA was removed from the website and social networks of the Circle of Good Foundation. “Such Affairs” sent a request to the organization asking for comment on the situation. At the time of publication of the news, the editors had not received a response.

On February 3, the Ministry of Justice officially registered the federal fund “Circle of Good” to help children with severe and chronic, including rare, diseases. It is financed by increasing the personal income tax rate for those people whose income exceeds 5 million rubles per year.

On February 11, at the first meeting of the board of trustees of the Circle of Good Foundation, Spinraza, Zolgensma and Evrisdi (risdiplam) were included in the list of drugs for SMA that the organization will purchase. One package of Spinraza costs just over 5 million rubles in Russia.

On February 15, the government sent the first 10 billion of the 60 billion rubles allocated for the year to the fund for the purchase of medicines for the organization’s future beneficiaries.