Health Ministry to cover 114 SMA patients’ medicine expenses after 8-month-old baby dies

ANKARA

The Health Ministry has sent a letter to the Social Security Institution (SGK), the state’s health insurance body, to cover all medical expenses for 114 spinal muscular atrophy (SMA) patients in Turkey, after an eight-month-old baby died due to a lack of financial means, daily Habertürk has reported.

The ministry letter reportedly indicated that among the 253 SMA patients who applied for their medicine expenses to be covered, 132 of them were diagnosed with type 1, which is considered the most severe form of SMA, as the illness is an inherited condition that appears when the child is between three and six months of age. 

Out of the 132, only 114 patient patients were reportedly eligible to receive the specific medication, as the remaining 18 did not meet the specific international scientific criteria reported by the medicine provider firm. 
The ministry’s move came two days after an eight-month-old baby with this illness, Eymen Çapkın, died because his family lacked the financial means to cover the medicines worth $561,000 (around 2 million Turkish Liras), despite a fundraising event. 

At the time of Çapkın’s death, some $300,000 (1.07 million liras) were reportedly still required to secure medicine for his treatment. 

The raised funds for Eymen were collected in accounts opened with the permission of the Sakarya Governorate. 

Eymen’s father, Metin Çapkın, said the director of the Sakarya provincial associations, the deputy governor, and the commission that organized the fundraising event - consisting of the local muhtar (neighborhood head), tradespeople and grandfather İbrahim Çapkın - would now decide how the already raised funds would be put to use, according to another repot in daily Habertürk.

The Sakarya Provincial Associations Directorate reportedly indicated that after the commission’s decision, the money would be dedicated to two patients with SMA in the province.  

Metin Çapkın, on the other hand, requested that the raised funds be kept in accounts for a while longer, because if he and his wife thought about having a second baby, there was a 25 percent chance that the child would be born with the illness.