Turkey's social security system has extended support to 1,100 spinal muscular atrophy (SMA) patients across the county, according to Turkish health authorities. A drug with "nusinersen sodium," which is among the experimental drugs and treatments recently approved by U.S. and European health authorities, was also approved by Turkey's Pharmaceuticals and Medical Devices Agency (TITCK) for import.
The Turkish state is covering the cost of the drug with nusinersen sodium, which has been in common use for the last four years and contributed to the recovery of SMA patients to a certain level. According to data shared by the drug's producer Biogen, over 10,000 SMA patients, including 3-day-old babies as well as adults, have been treated so far. In Turkey, the cost of the drug, 73,000 euros (over $88,700) per dose, is covered by the country's Social Security Authority for 1,100 families across the country.
A social media debate – prompted by opposition politicians' calls to divert financial support from the coffers of the Turkey Wealth Fund (TVF) to patients in need – brought the issue to the spotlight. Families of young patients often turn to social media for donation campaigns to fund the treatment abroad for their children. This drug, classified for gene treatment, has not been included by TITCK for import as it remained unproven in clinical experiments. Zolgensma, developed by AveXis, is available to patients in some countries but has yet to be approved in Turkey. It is not directly covered by public funds in any country. Of the countries that approved the drug's use, Germany through state health insurance funds and Japan with its general public fund pledged to cover treatment costs, but these have not grown into standard policies yet. The United States approved its use. It is the most expensive SMA treatment with its over $2 million list price. Despite the extreme cost, it offers only a limited level of recovery, according to clinical experiments. Experimental drugs and treatments developed for SMA, a rare, genetic and neuromuscular disease, caused controversy due to their high costs and uncertainty about their efficiency. None of the SMA drugs and treatments have been proved to provide complete recovery, while their cost, not affordable for most families, can potentially put public health funds under stress.
On the country's SMA treatment policies, Health Minister Fahrettin Koca made a statement on Jan. 3, stressing that the Turkish public authorities would continue to cover the full cost of proven drugs and treatments.
There is currently no scientific proof that the gene treatment offers full recovery, Koca said, adding that certain pharmaceutical companies through campaigns abuse the conditions of SMA patients and their families.