Breaking News: Minister Koca’s Flash Statement on ‘SMA’ Disease! We will not allow our children to be used as guinea pigs



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“Campaigns are being carried out in favor of our children with Spinal Muscular Atrophy (SMA), which is frequently brought to the agenda of our country. The treatment of diseases is not carried out by displaying false heroism on social networks, but by following the path of science.
Our state treats our children with SMA using all its means. It is never acceptable to abuse this topic.

Within our Ministry, we have a scientific council made up of scientists who are experts in their fields and with experience in the treatment of SMA, where the treatment of these children is planned. Our SMA Scientific Council informs families and family associations first-hand. In our country, we do not have a single patient with SMA who does not receive treatment. All treatment costs are covered by our government free of charge.

GENETIC TREATMENT DATA ARE REVIEWED WITH RETENTION

The gene therapy data, which has recently been developed and is on the agenda, was immediately and thoroughly scrutinized by our SMA Scientific Committee, as in the first period. In the last 2 months alone, our scientific committee has collected 5 times and examined the data on the drug. This week there will be an evaluation meeting. The evidence published in scientific platforms on the efficacy of gene therapy is not yet sufficient, and there is currently no evidence of its superiority over administered therapy. Some studies have reported serious side effects, especially liver failure and low platelet count (bleeding tendency).

WE DO NOT ALLOW OUR FAMILIES TO BE ABUSED

Furthermore, as part of the gene therapy application procedure, the immune system needs to be suppressed for at least a month, especially in some patients with greater weight, this process can take up to 1 year. In our already fragile SMA patients, infections and suppression of the immune system pose a higher risk, and the process can be fatal during any disease course, regardless of disease. I would like to clarify the dirty campaign that was carried out on our children with SMA. All treatments that are up-to-date and proven effective are applied with the recommendation of our SMA Scientific Committee. We are clearly against the use of our children as guinea pigs. Except for scientific data, we will not allow the game of global pharmaceutical companies. We will not allow our families to be abused. Currently, there is no concrete data that shows that the method proposed under the name of gene therapy works scientifically. However, this situation is abused by the campaigns carried out by pharmaceutical companies. We will not allow our children to be used as guinea pigs under pressure from the pharmaceutical companies.



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