Debate on SMA medication in Turkey

Koca denies using children as “guinea pigs”: SMA treatment controversy

“We will not allow our children to be used as guinea pigs with the pressure of pharmaceutical companies.” On January 3rd, Fahrettin Koca, Health Minister of Turkey wrote a lengthy message on Twitter pointing to a “dirty” campaign exploiting families of patients suffering from Spinal Muscular Atrophy (SMA) amidst the raging debate about the funding of medication for SMA.

The campaign argues about lack of access to the medication needed to treat the illness in Turkey due to which the patients are forced to look for the drugs abroad. The minister reassured the citizens that it is capable of funding their medical needs urging them not to opt for the untested medicines.

SMA is a medical condition that impacts the muscles leading to the limitation in movement capacity of patients and causing a loss in motor neuron cells in the spine. The only for hope the young patients and their families is the early diagnosis of illness.

Switzerland-based Novartis has developed the drug Zolgensma which is a gene therapy medication yet to be approved in Turkey but is available to patients in some countries. The therapy is highly expensive and has been approved in the US. The families of patients launch donation campaigns in Turkey to avail themselves of the treatment.

Koca said all the resources for the treatment have been mobilized to Turkey and a scientific advisory board has been established for assessing the new scientific method of treatment. Also, the cost of the treatment will be covered for free by the state. He said that gene therapy lacked evidence for its efficiency and showed side effects like a drop in platelets and liver failure. Further, the gene therapy needs at least suppression of the immune system for at least a month, for some patients, it can be prolonged for up to a year which creates a greater risk for frail patients.

Koca highlighted that designated the financial resources for the SMA treatment is much higher than the suggested Turkish Lira 75 million ($10.1 million).

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