Children with SMA and their families struggled to get the necessary treatments. Numerous campaigns were conducted and an important step was taken with the support of the public. Zolgensma, one of the new treatments for SMA disease, was included in the internationally approved drug list. Now, the drug may come to Turkey; however, the treatment is not yet within the scope of SSI reimbursement. Under current conditions, only patients who pay for the treatment will have access to this very expensive treatment.
You may have signed many campaigns for children with SMA so far; Maybe you have been the voice of SMA patients by supporting the donation campaigns run by families struggling for the lives of their children, and you have empowered their relatives.
As the Association for Combating SMA Disease, we have been advocating that SMA treatments should be included in reimbursement by the SSI since the first day. We launched this campaign in addition to the lobby, social media and awareness activities we conducted. By strengthening this struggle with your signatures, you can support all children to access treatment under equal conditions.
Only one of the current used in the treatment of SMA drug reimbursement including in Turkey. Patients and their relatives are carrying out campaigns and collecting money on social media to reach other treatment methods. Although the campaigns carried out are very tiring and wearing for families, the majority of patients cannot reach the targeted amount.
According to the current information we received from the Social Security Institution, there are 1300 children with SMA. All SMA patients have progressive disease and all need treatment equally. While accessing a portion of patients treated with individual drugs campaigns, in various parts of Turkey, in the villages, who live in rural areas, families do not have access to treatment for patients who can not campaigned. This situation is against the principle of equality.
Long live the children with SMA to support the campaign organized on change.org CLICK HERE
What is SMA?
SMA is a progressive, inherited rare muscle disease. Three of the drugs developed to be used in the treatment of SMA disease have been approved by the FDA (American Food and Drug Administration) and two of them by EMA (European Medicines Agency). (Priority review was given by EMA for the other drug.)
As the SMA Disease Fight Association; We think that all medicines should be within the scope of reimbursement and the physician should decide which medicine should be used according to the patient's health status. For this reason, we demand that all medicines be reimbursed by the Social Security Institution. Treatments will be inclusive for all patients only if they are covered by the SSI reimbursement.