ANKARA, Turkey — Few would have thought that Turkey’s political divide — running deep on myriad issues, from economic woes and femicides to pandemic measures and university rectors — could extend to critically ill infants in need of costly treatment to survive. The new rift, involving ministers and opposition figures, has come as a stunning milestone in the divisions of Turkish society, leaving the families of the sick children dismayed.
Lying at the core of the controversy are the limits Ankara has set in covering the ultra-expensive treatment of infants with spinal muscular atrophy, a deadly genetic disorder that progressively destroys nerve cells controlling the muscles.
After monthslong efforts, Mehmet Rifat Bacanli — a lawyer for families of children with the most severe type of the disease, estimated to number between 150 and 300 in Turkey — won a court ruling Nov. 27 that approved the procurement from overseas of a relatively new drug, needed for the treatment of the 16-month-old son of one of his clients. The treatment costs up to $2.5 million in the United States.
The ruling paved the way for an import permit for the drug, giving hope to many families grappling with spinal muscular atrophy, which strikes one in 6,000 babies in Turkey. Things, however, did not progress smoothly.
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