The SMA Scientific Board convened under the chairmanship of the Minister of Health. At the press conference held after the meeting, Minister Koca delivered statements.
“When we talk about SMA patients, we are talking about the most fragile state of life. Every step, every decision and every promise has to bear in mind this vulnerability. The sensitivity of the issue obliges us all to act with the utmost caution. The vulnerability in question is conducive neither to generating imaginary hopes from optimism, nor to ignoring the smallest possibility. What is constructive is the awareness of responsibility and the support received from evidence-based science. Unfortunately, even the opposite may be the case. However, fragile lives are untouchable lives. The hopes of these lives cannot be played with.”
"Pre-marital SMA screening is becoming mandatory"
Reminding that the drug with nusinersen active substance, the limits of which are revealed in SMA patients, is offered to patients free of charge within the scope of reimbursement in Turkey, “Studies conducted over the years and real data obtained from the lives of patients in Turkey show that the drug can provide benefits at an early stage. Unfortunately, there is no treatment that is effective in all periods of this disease."
Emphasizing that providing patients with the best available treatments and making their lives easier, as well as preventing new suffering due to SMA, is one of the most important goals, Koca continued:“SMA, which has no definitive cure today and is inherited, is a disease that can be prevented. For this purpose, we are introducing the SMA screening program for pre-marital couples and newborns. Pre-marital SMA screening is becoming mandatory."
“There is no unmet need for treatment for SMA in Turkey"
Sharing the outcomes of the SMA Scientific Board meeting, Koca stated that there were treatment options that modify the disease for different types of SMA disease and said:“There is no unmet need for treatment for SMA in Turkey. Since 2017, SMA Type 1 has been treated, and since 2019, SMA Type-2 and Type-3 have been treated. All options of nursinersen, risdiplam and gene replacement therapy have been shown scientifically and with real-life data that they show similar effectiveness when used in the first three months of the disease in SMA Type-1 patients. The superiority of these treatments to each other at an early stage has not been shown. The nusinersen active ingredient drug I mentioned will continue to be used for all of our patients as defined in the treatment guidelines. Some criteria that force patients to meet the ‘eligibility’ criteria for patients using this drug have been removed. It is extremely important to maintain standard controls for access to treatment.”
Stating that the appropriate treatment for the patients identified by the newborn screening will be started immediately and at the earliest possible time, Minister Koca said, “Along with the newborn screening program, infrastructure studies on access to all treatment options are being carried out with utmost dedication. It will be integrated into the healthcare system as soon as possible."
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