TEHRAN – The first shipment of Evrysdi, an oral medication used to treat spinal muscular atrophy (SMA), has been imported to the country, Saeed Azamian, CEO of the SMA Association of Iran, said on Tuesday.

Spinal muscular atrophy 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.

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

Spinal muscular atrophy is a disease that robs people of physical strength. This is the first oral medicine for SMA in the world and it entered Iran shortly after entering the global markets, which will soon be available to the patients with the supervision and cooperation of the Ministry of Health.

On August 2, the first batch of SPINRAZA – a drug special for patients suffering from SMA - arrived in the country, the Food and Drug Administration director announced.

According to the Ministry of Health, there are 500 SMA patients are living in the country, for them, the FDA pays 4 trillion rials (about $13 million) annually to cover their treatment costs.

The National Document on Rare Diseases has been approved in December 2020, with the aim of preventing the birth of infants with rare diseases and removing medical and therapeutic problems.

The Majlis (Iranian Parliament) has approved a total of 50 trillion rials (about $156m) for the treatment of patients with rare diseases, Health Minister Bahram Einollahi has said.

A total of 250 trillion rials (around $943 million) has been proposed in the budget bill for the current year (started on March 21) to support and treat patients with rare diseases.

For the first time in the budget bill, a fund has been set up to support patients with such diseases, Hamidreza Haji Babaei, chairman of the planning and budget committee of the parliament (Majlis), said in February.

U.S. sanctions have directly impacted the lives of Iran's most vulnerable citizens, including women, children, and patients.

In May 2018, the U.S. began to unilaterally impose sanctions against Iran after the former left the Iran agreement, officially called the Joint Comprehensive Plan of Action (JCPOA).

The 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.

Iran has repeatedly denounced the sanctions as an act of “economic war”, “economic terrorism”, and “medical terrorism”.

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