The Ministry of Health’s trick for SMA patients: We have no money, wait for the Iranian drug.
Ramak Heidari, founder of the Dystrophy Association, stated that the Ministry of Health just wants to silence the families. They have said, ‘Where should we get the money from?’ How do they plan to distribute a drug that hasn’t even passed animal testing among patients?
The founder of the Dystrophy Association stated that the Ministry of Health did not purchase the drug a second time to reach the second priority children. They only bought the drug once in one shipment. After gatherings organized by families, the Ministry of Health announced they would also provide the drug to the second priority, although the first priority dose was also incompletely administered.
For example, a person who used to consume two bottles of Risdiplam syrup per month sometimes consumed one bottle and sometimes none at all. On the other hand, the Ministry of Health and Medical Education announced that these drugs have not been effective.