Turkey provides support for muscular atrophy patients

ANKARA

Turkey's social security system extends 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 the US and European health authorities, was also approved by Turkey’s Pharmaceuticals and Medical Devices Agency (TITCK) for import.

Another drug, classified for gene treatment, has not been included by TTICK for import as it remained unproven in clinical experiments. The drug, which made headlines recently in Turkey owing to online donation campaigns for SMA patients, 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.

Experimental drugs and treatments developed for SMA -- a rare, genetic and neuromuscular disease -- cause 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.

Turkey covers cost of proven drugs, treatments

The Turkish state covers the cost of the drug with nusinersen sodium, which is 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 toddlers as well as adults, have been treated so far.

In Turkey, the cost of the drug, €73,000 (over $88,700) per dose, is covered by the country's Social Security Authority for 1,100 families across the country.

The cost of the drug classified for gene treatment is not currently covered as TITCK has not yet included it on its imported drug list.

The drug was developed by the US-based biotechnology company AveXis and 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 the clinical experiments.

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.

*Writing by Ahmet Gencturk