TEHRAN –The ministry of health has announced that spinal muscular atrophy (SMA) screening will be launched in the current Iranian year which started March 20.

SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.

It is the number one genetic cause of death for infants. It affects approximately 1 in 11,000 births, affecting any race or gender.

The plan aims to prevent the birth of children with SMA, IRNA quoted Hossein Farshidi, an official with the Health Ministry, as saying.

Three groups will be screened for SMA including the public, those who have married their relatives (consanguineous marriage), and parents of children with SMA.

A domestically developed diagnostic kit will be used for screening SMA.

SMA treatment

Currently, more than 600 people in Iran, most of whom are children, are suffering from SMA.

Nusinersen with the brand name SPINRAZA is the first medication for the treatment of SMA that was approved by international organizations in 2016 to treat the disorder and is now used in more than 50 countries.

In August 2023, the Iranian Red Crescent Society (IRCS) announced that the second shipment of SPINRAZA medicine which is used for the treatment of spinal muscular atrophy patients arrived in the country.

In August 2022, the first shipment of Evrysdi, an oral medication used to treat SMA, was imported to the country, said Saeed Azamian, CEO of the SMA Association of Iran.

Risdiplam, sold under the brand name Evrysdi, is the first oral medication approved to treat the disease.

The  U.S. sanctions, preserved under the Joe Biden administration, have restricted the financial channels necessary to pay for basic goods and medicine, undermining supply chains by limiting the number of suppliers willing to facilitate sales of humanitarian goods to the country

442 rare diseases identified in Iran

 A total of 442 rare diseases have been identified in the country according to a recent report by the Rare Disease Foundation.

The incidence of rare diseases is very low to the extent that maybe one or two people with a certain rare disease are present in the country. Some rare diseases such as ‘butterfly skin or EB’, ‘Spinal muscular atrophy (SMA)’, ‘Metabolic diseases’, ‘Autism’, and ‘Dystrophies' are among the most common cases in the country. A sum of 50 trillion rials (about $100 million) was allocated in the past Iranian calendar year that ended on March 20, 2023, IRNA reported, adding that the figure rose to 70 trillion rials this year.

Considering the number of patients identified, the needed medicines, and medical tools, a sum of 150 to 180 thousand trillion (about $300 million) is expected to be allocated for the current Iranian calendar year, beginning on March 21.

MT/MG