HlthMin Rafila: There are therapeutic, financial resources for 200 spinal muscular atrophy patients
Health Minister Alexandru Rafila on Monday said that there are therapeutic and financial resources for 200 spinal muscular atrophy patients, and the early detection of this disease can improve the development and life expectancy of children with this pathology, told Agerpres.
"Early diagnosis of this disease is accessible at the moment from a technological point of view. A reduced incidence of between 1 in 10,000 and 1 in 4,000 cases will not have a huge impact in terms of the number of detected cases. On the other hand, there are therapeutic resources and there is also a great financial effort to treat more than 200 patients, the vast majority of them children. Early detection of this disease can improve the development and life expectancy of these children. We are now working together with specialist boards that examine a proposal made by several doctors from the Robanescu Centre," Rafila told a specialist conference.
He participated virtually in a conference called "Spinal muscular atrophy - how to increase the chance of a life without disabilities" organised by the Dr Nicolae Robanescu National Clinical Centre for Children's Neuro-Psychomotor Rehabilitation.
According to him, a screening program could be implemented for the early detection of spinal muscular atrophy, but that could not be done "overnight."
"I think that such a programme is doable, but we should be aware that it cannot be done overnight. Although it would be good to create a few regional hubs that involve maternity hospitals with better accessibility and later be able to expand them - and there must obviously be regional coordination of these programmes, because there are a number of institutions that treat this rare disease at the moment and they could be the regional hubs that collect the data and initiate the treatment procedures (...) This is how I see the screening programme in two steps: a regional development that will later be expanded and these regional projects added up to lead to a screening of newborns who are currently somewhere around 160,000 - 170,000 annually. That means we can have somewhere between 17 and 40 some cases each year, depending on the incidence. We hope to be able to do this under the new Operational Programme Healthcare where such hubs are financeable. It is a program that takes place between 2023 and 2030. When we have all the investment proposals, we will certainly identify the opportunity to develop such hubs," Rafila said.
He added that there are 14-15 spinal muscular atrophy hubs nationwide in Romania.
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