Minister sees drug companies behind campaign seeking to help children with SMA

Turkish Health Minister Fahrettin Koca has claimed the interests of international drug companies are behind a public campaign seeking to use funds from Turkey’s Wealth Fund for the treatment of children with spinal muscular atrophy (SMA).

As part of the campaign launched on social media over the weekend as well as on change.org, the Turkish government is being asked to transfer the TL 75 million ($10 million) that was unclaimed in the New Year’s lottery jackpot of TL 100 million ($12.7 million) from the Wealth Fund for the treatment of children suffering from SMA, a rare neuromuscular, life-threatening disorder that results in the loss of motor neurons and the progressive atrophy of muscles.

The campaign drew huge support on social media, with many celebrity figures and opposition politicians calling on the government to take action to end the suffering of these children and their families who cannot meet the high treatment costs of the rare genetic disease.

However, for Koca, the motivation for the campaign is different and is aimed at serving the interests of drug companies.

“There is nothing better than displaying a joint reaction to an issue. However, as far as we can see, we are faced with an effort aimed at serving the interests of the drug companies,” Koca announced in a statement from his Twitter account on Sunday.

“We will not let our children be used as guinea pigs due to pressure from drug companies,” the minister said, adding that nobody should support the “dirty” campaign for children with SMA.

According to Koca, the expensive drugs used in the treatment of SMA are ineffective and can lead to serious side effects among children.

The drug developed for SMA patients and approved by the US Food and Drug Administration (FDA) is called Zolgensma. The campaign aims to provide this drug — the most expensive on the market with a cost of approximately $2.1 million per patient — to children with SMA.

SMA is seen one in every 6,000 people in Turkey, while the world average is one in every 10,000. Some Turkish families whose children suffer from SMA organize donation campaigns to make it possible for their children to get access to the expensive drug therapy in the US.

Turkey’s Wealth Fund, established in 2016, is chaired by President Recep Tayyip Erdoğan and holds stakes in Turkey’s biggest state-owned enterprises including Turkish Airlines, telecommunications giant Türk Telekom and lenders Ziraat Bankası and Halkbank.