Ministry of Health Refuses to Import SMA Drug 'Due to High Costs'

The director of the Iran Dystrophy Association criticized the 'budget shortfall in the health sector' in the country, stating that the Ministry of Health is unwilling to import the drug for SMA (Spinal Muscular Atrophy) 'due to its high cost.' Ramak Heydari, the CEO of the Association for the Support of Dystrophy Patients, reported in an interview with ILNA that patients suffering from this disease have resorted to emigrating from the country 'due to the lack of medication.' SMA, which falls under the category of dystrophy diseases, primarily affects the muscles responsible for chewing and swallowing food in infants. This rare disease, a type of neuromuscular disorder, subsequently involves the motor and respiratory organs of the affected infant. The only recognized drug that has been effective in slowing the progression of this disease is a medication called 'Spinraza,' which was approved in 2016. However, the price of this drug is $750,000 for a six-dose regimen, with each dose costing $125,000. This high cost has led the Iranian Ministry of Health, according to Ms. Heydari, to 'refuse to import' Spinraza. The CEO of the Association for the Support of Dystrophy Patients stated, 'As long as it is not proven that the SMA patients' medication is vital for their survival, these patients have no choice but to leave the country.' Unfortunately, according to Ramak Heydari, 'registered SMA patients in the Iran Dystrophy Association ultimately die three years later.' Despite the association's correspondence with the Ministry of Health, the Health Commission of the Parliament, and the Food and Drug Organization, Ms. Heydari stated, 'unfortunately, they believe this cost could be spent on another disease with a higher number of patients.' On the other hand, insurance companies, according to Ms. Heydari, refuse to cover patients who are members of the Dystrophy Association. This is not the first time that patients with special diseases in Iran have been deprived of insurance coverage. Previously, in 2013, the president of the Iranian Thalassemia Association stated that social security insurance companies only remove thalassemia patients from coverage to reduce costs, depriving them of drug support. Two weeks ago, the head of the same association reported the death of 93 thalassemia patients due to 'heart complications' resulting from not receiving medication or receiving 'low-quality' drugs.