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Expanded neonatal screening identifies 30 children with SMA
- By Newsdesk
- Russia
- May 12, 2023
The "Circle of Kindness" State Fund reported on its work in 2022 and announced plans for 2023. This year, it is expected, among other things, to expand the list of drugs and medical devices purchased by the fund for wards, including those not registered on Russian Federation territory, as well as "expanding medical care services using unique and resource-intensive methods of treatment with proven effectiveness."
Furthermore, the fund anticipates the addition of new names to the list of nosologies for children who receive assistance. To improve the effectiveness of communication with people who may become wards of the Circle of Kindness, the foundation intends to involve non-profit organisations in its work and strengthen interaction with the executive authorities of the Russian Federation's constituent entities.
According to the foundation's chairman of the board of directors, Archpriest Alexander Tkachenko, the Circle of Kindness database currently includes 6,000 children, 1,100 of whom have spinal muscular atrophy (SMA). On May 11, he spoke about it at a press conference at TASS. He also stated that 30 newborns have been diagnosed with this disease as a result of expanded neonatal screening since the beginning of 2023.The programme has been in operation since January 1, 2023.
"For 17 of them, applications have already been received by the fund, 13 have been approved and delivered by Zolgensma, and four other patients have been prescribed other drugs due to the nature of the disease," Tkachenko explained. He also mentioned that children in the Russian Federation's new regions began to receive treatment. Currently, 15 applications have been implemented.
Treatment for SMA patients may become more affordable as a result of the efforts of Russian pharmaceutical companies that develop their own drugs to replace imported ones, which can cost hundreds of millions of rubles. Thus, Biocad development is already in clinical trials, and R-Pharm has begun work on developing a drug to treat SMA.