Health Minister Fahrettin Koca said, “We are implementing a program to screen all couples and newborns for SMA before marriage. SMA screening is mandatory before marriage.”
“FRAGILE LIVES ARE UNTOUCHABLE LIVES”
The Ministry of Health SMA Scientific Committee convened under the chairmanship of Minister Fahrettin Koca. Minister Koca made statements after the meeting. Drawing attention to the sensitivity of the issue, Koca said, “When we talk about SMA patients, we are talking about the most fragile state of life. Every step, every decision and every word has to take care of this vulnerability. The sensitivity of the issue obliges us to act with utmost care. The fragility in question does not mean anything from optimism to producing illusory hopes. “What is constructive is the sense of responsibility and the support received from evidence-based science. Unfortunately, even the opposite can be the case. However, fragile lives are untouchable lives. The hopes of these lives cannot be played with,” he said.
Stating that the ministry is based on scientific data that has become concrete and promising results on SMA, Koca said:
“We all know that the first rule of medicine is to avoid everything that is likely to harm the patient in the light of the available information. As per this rule, medicine constantly adapts itself to new information without risking. In this sense, science is the pioneer, medicine is the follower. The drug, the limits of which have been revealed, is within the scope of the treatment applied in our country and this drug is provided free of charge. Studies conducted for years and real data obtained from the lives of patients in our country show that the drug can provide benefits at an early stage. Unfortunately, there is no effective treatment in every phase of this disease. “Providing the best treatments and making their lives easier is at the core of our strategy. Preventing new suffering from SMA is one of our most important goals.”
BEFORE MARRIAGE SMA SCREENING MADE MANDATORY
Fahrettin Koca said that SMA is a disease that can be prevented. Couples at risk can have a child away from this risk with in vitro fertilization method if they wish. The cost is covered by our state. In addition, SMA disease is included in the genetic screenings for new-born babies in terms of diseases. Thus, the chance to catch it in the early period when the treatment is effective is revealed. The work will be implemented by the end of the month,” he said.
Minister Koca announced the results of the SMA Scientific Committee meeting as follows:
“There are treatment options that modify the disease for different types of Spinal Muscular Atrophy. There is no unmet treatment need for SMA in our country. Since 2017, SMA Type1 and since 2019 SMA Type-2 and Type-3 patients are treated. Nursinersen, risdiplam It has been scientifically and real-life data that all of the treatment options and gene replacement therapy options are similar when used in the first three months of the disease in SMA Type-1 patients. It will continue to be used for our patients. Some of the criteria forcing patients in the ‘eligible for treatment’ criteria for patients using this drug have been removed. It is extremely important to continue standard controls for access to treatment. It is also important to continue with the appropriate treatment for patients detected by newborn screening. Treatment will be started at the earliest. With the newborn screening program, infrastructure studies are carried out with utmost dedication to access all treatment options. It will be integrated into the health system as soon as possible.