MDA Hellas ‘s proposal to the Ministry of Health in relation to the addition of Spinal Muscular Atrophy (SMA) in the Newborn Screening Program and the Prenatal Testing
In the context of its statutory purpose, MDA Hellas, having previously made a proposal to the Ministry of Health regarding the prevention of SMA and taking into account the frequency, knowledge of the natural progression of the disease, as well as the fact that there is a diagnostic, precise and specific examination, has sent a new proposal, requesting:
- The inclusion of SMA in the newborn screening program in accordance with the program of prevention of health risks “Spiros Doxiadis” , which provides “the extension of the National Program of Preventive Neonatal Screening (NPPNS), so that early diagnosis concerns all the rare but serious diseases, which can be treated and can be controlled”. In this way, immediate diagnosis at birth and treatment of patients will be achieved, which will result in their better prognosis. According to rough data from MDA Hellas, the average time of diagnosis in type I SMAs in 2020 is 5 months and the average time medication begins is 6.5 months.
- The inclusion of this specific disease in the prenatal test performed in each pregnancy. Knowing and appreciating the intention and initiatives of the Ministry to shield the prevention of this disease, we hope to complete the necessary actions to include Spinal Muscular Atrophy (SMA) in the Neonatal Screening and Prenatal Program.