Our Vice Chairman of the Board of Directors, Ece Soyer Demir made an interview with 'BBC Turkish'.
Ece Soyer Demir, Vice Chairman of the Board of SMA Disease Fighting Association, states that their primary demands for the Ministry of Health are related to drugs.
Stating that her son Çağan Meriç was treated with the drug Spinraza, Ece Soyer Demir said, "If my son is alive today, there are two reasons, the first is medicine, the second is good care."
"Our aim as the association is to include all medicines in the reimbursement scope. Doctors may consider different treatment methods suitable for their patients. Two or three drugs can be used at once. As SMA-DER, we do not make a preference or prioritization among drugs. This is at the discretion of physicians. "
Demir, in a meeting with SSI have reached the information that there are 1,300 patients in Turkey, but remarking that only 30 patients reflected to social media, she puts an emphasis on equally accessible treatment for everyone.
"We have patients who live in various places, villages, rural areas in Turkey. Most of our patients can neither start nor run a campaign on social media, the treatments will only be inclusive for all our patients if they are covered by the SSI reimbursement.
"All children's illness is fatal. All patients suffer the same, all patients need equal treatment. Our aim is for SSI to include all treatment methods within the scope of reimbursement for all children. May all patients benefit from this. "
Is it possible to prevent this disease?
The most effective method that can be applied to prevent SMA disease is to determine whether the couples who want to have children are carriers or not with a test. Ece Soyer Demir, from SMA Disease Fighting Association, says that they are also fighting for the prevention of this disease.
For this, Demir demands that SMA carriage screening before marriage and pregnancy be included in mandatory tests:
“My husband and I didn't know we were carriers until our son was born. If we knew we are carrier, our life would be very different today. Neither we nor Çağan Meriç would have had these problems. As a mother, every time I put food in my son's baby food bag, I wonder what he would like to eat if he was a healthy child. I want no other mother to experience this, no child to have to be aspirated. It is possible to prevent this with a very simple test. "
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