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Health Minister Fahrettin Koca made statements on his social media account.
The husband said: “We will not allow our children to be used as guinea pigs under pressure from the pharmaceutical companies. Our fight will continue until SMA disease is not seen in our country and all of our existing patients are treated. ” In Minister Koca’s written statement, the following statements were used;
* As you know, campaigns are carried out in favor of our children with Spinal Muscular Atrophy (SMA), which is frequently brought to the agenda of our country.
* We are responsible for the recovery of each of our patients regardless of their illness. Especially if our patient is a child, this deserves all priorities at the highest level. The health and life of each of our children is our most sacred role.
* One of the issues to which we are most sensitive as a nation is our children. The treatment of diseases is carried out following the path of science, not showing false heroism on social networks.
“TREATMENTS ARE PROVIDED”
* Our state treats our children with SMA using all its means. Abuse of this topic is never acceptable.
* 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.
* This committee evaluates the most up-to-date methods in the treatment of our children and implements them as quickly as possible. Financial conditions are not even on our agenda in this regard.
“THE FAMILIES ARE INFORMED”
* 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.
* The data on gene therapy, which have recently been developed and are on the agenda, were immediately and meticulously examined by our Scientific Committee of the SMA, 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 no evidence of its superiority over currently administered therapy. Some studies have reported serious side effects, especially liver failure and low platelet count (bleeding tendency).
“IT CAN BE DEADLY”
* Also, as part of the gene therapy application procedure, the immune system needs to be suppressed for at least a month, especially in some heavier patients, this process can take up to 1 year.
* In our already fragile SMA patients, infections and suppressed immune systems pose a higher risk, and the process can be fatal during any disease course, regardless of disease.
“DIRTY CAMPAIGN …”
* I would like to clarify the dirty campaign 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 global pharmaceutical companies gambling. 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.
“WE DO NOT ALLOW IT TO BE USED AS KOBAY”
* 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.
* There is no collective reaction to a problem. However, as far as we can see, we are faced with an organization that serves the purpose of pharmaceutical companies.
“THE PROBLEM IS NOT THE SOURCE”
* The figures mentioned by the organization of the campaign and the proposed financial resources do not represent any additional value to the resource allocated to the treatment of our children. It is not a question of resources.
* Our country is capable of treating its citizens in all conditions. The main problem here is going beyond the limits of morality and defending global pharmaceutical companies by rendering our state incapable. We will not be a tool in this campaign, which is campaigning together and trying to weaken our state.
* Our state will continue to use all treatments that have been shown to work for our children for free.
* SMA disease is a genetic disease. After that, precautions will be taken by conducting gene screening for all family candidates before marriage and our fight will continue until SMA disease is no longer seen in our country and our existing patients are treated.
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