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The National Lottery jackpot of $ 75 million transferred to Turkey Fund Assets of SMA in the social media campaign was launched for use in treating children.
Health Minister Fahrettin Koca, issuing a written statement, said: “We will not allow our children to be used as guinea pigs under pressure from pharmaceutical companies. Our fight will continue until SMA disease is not seen in our country and all of our existing patients are treated. ”
The following expressions were used in the written statement:
” FREE FROM OUR STATE ”
‘As you know, campaigns are carried out in favor of our children with Spinal Muscular Atrophy (SMA), which is frequently placed on 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 we are most sensitive to 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.
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. 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 for free. ”
“IT CAN BE DEADLY”
“The data on gene therapy, which has recently been developed and is on the agenda, were immediately and thoroughly 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 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). 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 create an increased risk and, during any course of the disease, the process can be fatal regardless of the disease. ”
” I WANT TO OPEN THE DIRTY CAMPAIGN ”
“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. 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 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 circumstances. 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 free for our children. SMA disease is a genetic disease. From now on, action 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. ‘ ‘.
