In his statement to the Turkish SMA Foundation Science and Health News Agency, he said that all treatment techniques for SMA patients should be covered by SSI.
Ece Soyer Demir, Deputy Leader of the Board of Directors of the Turkish SMA Foundation, which carries out studies in many areas from the medical supplies they need to medical devices, from psychosocial aid to educational scholarships, to increase awareness of Spinal Muscular Atrophy (SMA), which is a preventable disease. He made a statement to the News Agency (BSHA) regarding the efforts made with SMA and the expectations from the SMA Science Council meeting to be held by the Ministry of Health on Tuesday, January 31st. Stating that 3 different treatment procedures have been approved by the EMA (European Medicines Agency) and FDA (American Medicines and Nutrition Administration) to be used in the treatment of SMA disease, Demir said, “Currently, only one of them is within the scope of SSI reimbursement in our country. The mechanisms of action and usage formulas of drugs are different from each other. We hope that all treatment procedures will be covered by SGK.
“We Expect Promising Regulations for the Benefit of SMA Patients”
SMA Foundation of Turkey, in order to contribute to the legal regulations on SMA disease. Demir stated that he carries out advocacy activities and said, “In this context, we closely follow the developments and regulations both in the world and in our country. The Scientific Committee is not a decision-making system in this process, but a committee formed to make recommendations in the light of scientific data. It carries out its studies to provide consultancy support to scientific studies on the subject and to offer expert opinions in related fields. Therefore, this meeting is also a scientific meeting where academic information will be evaluated and opinions will be presented. We hope that the decisions to be taken by the decision-making systems in line with the evaluations and recommendations that will come out from here will lead to promising regulations for the benefit of our patients.
“Improving Patients’ Quality of Life is Our First Priority”
Ece Soyer Demir, Deputy Leader, who answered our question about whether the SMA Foundation of Turkey made any attempt to cut off their access to medication by getting stuck in the ‘physics scoring test’ despite the fact that many SMA patients were excluded from the criteria, said: There was no negative feedback. Physical assessment scoring is applied to follow the progress of the patients. The FTR score is the same, and the drug treatment of the remaining patients is continued. When one of the other rough conditions (hypoxia, a second disease accompanying) the drug use described in the SUT is encountered, the treatment can be interrupted. We continue our negotiations with authorized institutions and organizations on every subject that will increase the quality of life of patients.”
SMA PATIENTS WAITING FOR THEIR MEDICINE CALLED TO THE MINISTER KOCA!
“3 Different Ways of Treatment Approved by EMA and FDA”
Health Minister Fahrettin Koca announced that 2 more drugs for patients will be discussed at the SMA Science Council meeting to be held on January 31. Regarding the value of these drugs in the treatment processes of patients, Demir said, “Every new development in SMA treatment makes us happy and hopeful. Three different treatment formulas have been approved by the EMA (European Medicines Agency) and FDA (American Medicines and Nutrition Administration) to be used in the treatment of SMA disease. Currently, only one of them is within the scope of SGK reimbursement in our country. The mechanisms of action and usage formulas of drugs are different from each other. For example, Nusinersen therapy is injected into the spinal fluid every 4 months, Risdiplam therapy is administered orally, and gene therapy is administered intravenously. There are various scientific publications on alternatives to treatments. The common feature of the 3 treatment methods is that the earlier they are taken, the more successful results they show in patients. Our hope is that all treatment formulas are covered by SGK reimbursement, and patients benefit from the treatment technique that their doctor deems appropriate. It is promising that a second drug will be made available to our patients. The SUT (Health Implementation Communiqué) has not been published by the Ministry of Health yet. We do not have any information about which patients will benefit from the treatment and what the drug criteria will be.
“We Act with the Element of Fair and Accessible Treatment for Every Patient”
Turkey SMA Foundation, which was established in 2017 with the need for a civil society movement in the process of approval in Turkey of the first drug that can reduce the devastating effects of SMA, whose clinic is severe and incurable, carries out many studies with the principle of ‘fair and accessible treatment for every patient’. Ece Soyer Demir, Deputy Leader of the Board of Directors of the Association, finally gave information about her work. Demir said: “The foundations of the Turkish SMA Foundation are to raise awareness of SMA in the society, to carry out advocacy activities to contribute to the legal regulation processes in treatment, to reinforce the free access of patients and their relatives to treatment, education and social rights. He was expelled with the Association of Dealing with his illness. As a rights-based and not-for-profit non-governmental organization, it focuses on; The association, which aims to produce tests in every field covering the needs of patients and their families, from awareness and advocacy activities to treatment and medical device support, from educational scholarships to basic needs, continues its activities as the TURKEY SMA FOUNDATION as of 2022 to give stronger reinforcement to the active participation of more SMA patients in life. . Just as in the middle of Treat NMD, Eurordis, Turkish Philanthropy Funds (TPF), Step by Step, Openly, Rare Diseases Network We are members of national and international civil society platforms, including (BILIM SAHHAT NEWS AGENCY)
