* Photo: Anadolu Agency (AA)
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The Grand New Year Lottery Prize of Turkey, which stood at 100 million lira (~12 million USD), was divided into four as a quarter ticket won it. However, since the other three tickets were not sold, it is announced that three quarters of this amount will be transferred to the Wealth Fund.
Since then several opposition MPs, other politicians, artists, physicians and scientists have been campaigning on social media, demanding that this 75 million lira be spent for the treatment of children with SMA.
CLICK - The price of saving your child
Spinal muscular atrophy, or SMA, is a neuromuscular disease that causes gradual wasting of muscles. The first type is the one that affects babies in the first months of their lives. There are two drugs that work.
Spinraza is a drug that needs to be administered every four months to keep the symptoms in check. Zolgensma, which is a gene therapy, is a one-off cure that was approved by the U.S. Food and Drug Administration (FDA) in May 2019 and costs over two-million dollars.
While Turkey has added the gene therapy to the "Foreign Medicine List" upon a court verdict, the drug is not covered by the Social Security Institution (SGK). Parents of children with SMA and several others have been campaigning so that the children can be treated before it is too late.
'Fake heroism'
Against this background, Turkey's Minister of Health Fahrettin Koca released a written statement on social media yesterday (January 3).
Referring to the campaigns launched on social media for the children with SMA, Minister has said that these campaigns are "displays of fake heroism." Defining campaigns as "dirty", Koca has indicated that the issue goes beyond the boundaries of morality and makes the state look weak.
His statement is briefly as follows:
"Especially when our sick [citizen] is a child, he or she deserves all priorities on the highest level. The health and life of every son and daughter of us is most sacredly entrusted to us. Our sons and daughters are one of the issues that we, as a nation, are most sensitive to.
"The treatment of diseases is undertaken not by displaying fake heroism on social media, but by following the path drawn by science. Our state has also been undertaking the treatment of our children with SMA by using all means. The abuse of this issue is unacceptable."
Minister Koca has also indicated that the data on gene therapy were immediately and meticulously examined by the SMA Science Board, the board has convened for five times over the past two months and another evaluation meeting will take place this week.
'They are deceived by pharma companies'
Further in his statement, Koca has said:
"I want to make something clear about the dirty campaign carried out through our children suffering from SMA. All current methods of treatment found to be effective are used upon the recommendation of our SMA Science Board. We are clearly against our children's being used as test subjects.
"For the time being, there have yet been no concrete data indicating that the method put forward as gene therapy scientifically works. However, this situation is being abused with the campaigns launched by being deceived by pharmaceutical companies. We will not let our children be used as test subjects with the pressure of pharmaceutical companies." (AÖ/SD)
