The Circle of Kindness does not support the experimental treatment of SMA

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The Circle of Kindness Foundation has expressed its stance on the treatment of spinal muscular atrophy (SMA) using combination therapy. To tackle this issue, one can adopt an approach that entails either prescribing the drug Evrisdi (risdiplam) or administering the drug Spinraza (nusinersen) after the infusion of the drug Zolgensma (onasemnogene abeparvovec). If a beneficiary of the foundation undergoes Zolgensma treatment without experiencing any improvements, they will not be eligible to receive further treatment with Spinraza or Evrisdi covered by the foundation.

Evrisdi and Spinraza are lifelong medications that patients need to take regularly, while the Zolgensma injection is a one-time administration. Meanwhile, the Foundation emphasizes that Zolgensma maintains its effect on the body for a remarkable span of seven years following treatment. Therefore, the potential repercussions of combining another medication with it remain undetermined.

The foundation’s stance is based on the absence of scientific evidence supporting the efficacy of combined therapy. “The Circle of Kindness Foundation was established with a fundamental principle: to allocate its funds exclusively towards medications and treatment methods that have been scientifically proven effective and safe through clinical studies and widely acknowledged in the medical literature. Pharmaceutical manufacturers should be responsible for funding experimental methods globally, while the public budget should only be allocated to proven methods of treatment. The foundation should not support experiments on children at the expense of Russian taxpayers,” the foundation’s press service said in a statement.