In the coming days, the Circle of Good Foundation will open the opportunity for parents to submit applications for medication provision for children with Shereshevsky-Turner syndrome. This was announced on December 19 by the chairman of the organization’s board Alexander Tkachenko at a meeting in the Public Chamber.
Shereshevsky-Turner syndrome was included in the list of diseases for which drug therapy is provided by the Circle of Good in October. This is a genomic disease that affects girls; it is characterized by various anomalies of physical development, one of the most common being short stature. It is corrected by growth hormone – somatropin.
Despite the fact that the fund’s board of trustees approved the drug for inclusion in the procurement list, applications were not opened. Pharmstandard, the main supplier of the drug, initially said it would be able to provide 300-400 children a year, with a requirement for 700 girls.
Therefore, the “Circle of Goodness” decided to discuss the current situation with representatives of the Ministry of Health, doctors, the manufacturer and parents of sick children. At the meeting, it turned out that Pharmstandard would still be able to provide the required amount of the drug – 27 thousand doses. “By February-March we will be able to supply 13 thousand doses, by April – another 7 thousand doses, in August – 7 thousand doses, 13 thousand – in December,” the company’s deputy general director cited the production plan Dmitry Pechenin.
Parent of a sick child Alexey Dudin I doubted that somatropin would really be enough: as a rule, as soon as drug provision for any group of patients begins, the need for the drug increases. Pechenin assured that in this case the manufacturer will be able to increase production volumes.
Tkachenko asked the Ministry of Health and the Federal Center for Planning and Organization of Drug Supply to promptly collect applications for the drug and announce an auction. Speed is important, since many parents now buy the drug at their own expense. Since March 1, 2023, somatropin has been included in the list of drugs subject to subject-quantitative registration; because of this, it is now unavailable in most pharmacies.
Director of the Department of Medical Care for Children, Obstetrics and Public Health Services of the Ministry of Health Elena Sheshko promised that in the coming days the department will inform the regions about the need to quickly collect applications and submit them to the fund.
Chief freelance specialist of the Ministry of Health in pediatric endocrinology Valentina Peterkova promised to prepare information for doctors about prescribing the drug. Somatropin is not indicated for all patients, but only for those who have an open growth plate and with a bone age of up to 12 years.