The Ministry of Health of the Russian Federation has proposed to amend the rules for providing assistance to children, including those with rare and severe diseases, Medvestnik reports. The corresponding draft resolution is posted on the federal portal of draft regulations.
Amendments are proposed to paragraphs 21 and 22 of the current rules. In particular, it is planned that applications for medical care and the documents attached to them will be sent to specialists. In particular, this concerns employees of medical universities and institutions of additional vocational education, medical and research organizations that are subordinate to the Ministry of Health or the Ministry of Education and Science or regional authorities. Within up to five working days, they have to prepare a conclusion on the validity of the grounds for medical care provision to a particular child with an orphan disease, including in another country, as well as the supply of medicines, medical devices and technical means of rehabilitation for the child.
According to the initiative of the Ministry of Health, the list of experts issuing their opinions will be formed by the Circle of Kindness Foundation to Support Children with Rare Diseases. The Expert Council of the Foundation will consider applications for medical care, taking into account the opinion of specialists from medical and research centers. The specialists involved will receive remuneration for their work.
The reason for changing the procedure for reviewing applications by the Circle of Kindness Foundation was the scandal around the situation when medical councils refused to prescribe Zolgensma to patients with spinal muscular atrophy (SMA).
The Circle of Kindness earlier urged Novartis to accelerate the launch of Zolgensma on the Russian market.