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Response to the SMA Call from the Minister of Health on Social Media

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Health Minister Fahrettin Koca made a press release on the social media agenda with the call for “75 million TL should be used for children with SMA.” Koca said that pharmaceutical companies will not allow the use of children as guinea pigs.

Of the 75 million transferred from the national lottery, which has been on the agenda for a long time on Twitter, High school Minister of Health regarding the use for sick children Fahrettin KocaA press release came from. From the official Twitter account of Health Minister Fahrettin Koca “With the pressure of pharmaceutical companies, our children Guinea pig we will not allow it to be used as. Our struggle will continue until SMA disease is not seen in our country and all our existing patients are treated.“He made a statement.

Minister Koca published a press release

Health Minister Fahrettin Koca stated that the campaign carried out on social media was not correct “Nobody with good intentions should be a tool for the dirty campaign carried out through our SMA childrenIt also published a press release titled “. Minister Koca’s press release is as follows:

“As you know, campaigns are carried out for our children with Spinal Muscular Atrophy (SMA), which is frequently brought to the agenda in 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 the priorities at the highest level. The health and life of each of our children is our most sacred trust. One of the issues that we are most sensitive to as a nation is our children. The treatment of diseases is carried out by following the path of science, not by displaying fake heroism on social media.

Our state provides treatment for our children with SMA by using all its means. Abuse of this issue is never acceptable. Within our Ministry, we have a scientific board consisting of scientists who are experts in their fields and experienced in SMA treatment, where the treatment of these children is planned. The most up-to-date methods in the treatment of our children are evaluated by this committee and implemented in the fastest way possible. Financial conditions are not even on our agenda in this regard.

Our SMA Science Board informs families and family associations first hand. In our country, we do not have even one SMA patient who does not receive treatment. All treatment costs are covered by our government free of charge.

The data on gene therapy, which has been developed recently and is on the agenda, was immediately and meticulously examined by our SMA Scientific Committee, as in the first process. In the last 2 months only, our scientific committee has gathered 5 times and examined the data about the drug. This week will hold an evaluation meeting.

The evidence published in scientific platforms on the efficacy of gene therapy is not yet sufficient and there is no evidence that it is superior to the currently administered therapy. Some studies have reported serious side effects, especially liver failure and low platelet count (bleeding tendency).

In addition, as part of the application procedure of gene therapy, the immune system needs to be suppressed for at least one month, especially in some patients with higher weight, this process may take up to 1 year. In our already fragile SMA patients, infections and suppression of the immune system pose a greater risk, and during any disease course, the process can be fatal regardless of the disease.

Dear citizens, I would like to clarify the dirty campaign carried out on our children with SMA. All treatments that are current and proven to work 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 showing that the method proposed under the name of gene therapy works scientifically. However, this situation is abused by the campaigns made by the pharmaceutical companies. We will not allow our children to be used as guinea pigs with the pressure of pharmaceutical companies.