Health Minister Fahrettin Koca announced on Monday that the Ministry of Health soon launch of screenings for spinal muscular atrophy (SMA) for newborns. the move comes after the country made it is mandatory for newlyweds on screen for the rare disease last year.
SMA is a rare disease that causes 170 babies to be born with on average every year in Turkey. The disease affects nerve cells and makes basic abilities like difficulty walking, eating and breathing.
Koca was speaking at a symposium held in the capital Ankara on the opportunity of Rare Disease Day. the minister indicated that they were preparing an action plan to combat rare diseases and it would be revealed later what year. He said neuromuscular diseases, including SMA, were a major problem amount of rare diseases in Turkey and they were settling up special centers for neuromuscular diseases in Turkey, noting that the infrastructure work has been completed in 21 centers to date. He also noted that Turkey is striving to remain up-nowadays in medical advances in the world of treatment and prevention of rare diseases. “Our SMA screening program for potential couples are among the few such genetic screenings applied across the world,” he said. He added that they also offered preimplantation genetic diagnosis for married couples with high probability of having children with genetic diseases.
The critical situation of SMA patients shed light in these last years with aid campaigns for access for expensive drugs not yet approved by Turkey. Turkey offers free medicine to patients, but most families seek treatment abroad, especially for Zolgensma, an experimental drug that would have shown promising results results.
