FDA imports drugs for SMA patients
TEHRAN – The first batch of SPINRAZA – a special drug for patients suffering from spinal muscular atrophy (SMA) – has arrived in the country, the director of the Food and Drug Administration announced on Tuesday.
SPINRAZA is a prescription medicine used to treat SMA in pediatric and adult patients.
Another drug will also be provided to patients in the near future, ISNA quoted FDA Director Bahram Daraei as saying.
The National Document on Rare Diseases was approved in 2020 to prevent the birth of infants with rare diseases and solve medical and therapeutic problems.
According to the Ministry of Health, there are 500 SMA patients living in the country, for them the FDA pays 4 trillion rials (about $13 million) per year to cover their treatment costs.
The National Document on Rare Diseases was approved in December 2020, with the aim of preventing the birth of infants with rare diseases and solving medical and therapeutic problems.
The Majlis (Iranian Parliament) has approved a total of 50 trillion rials (about $156 million) for the treatment of patients with rare diseases, Health Minister Bahram Einollahi said.
A total of 250 trillion rials (approximately $943 million) has been proposed in the finance bill for the current year (started March 21) to support and treat rare disease patients.
For the first time in the budget bill, a fund has been created to support patients with these diseases, Hamidreza Haji Babaei, chairman of the parliament’s planning and budget committee (Majlis), said in February.
US sanctions have had a direct impact on the lives of Iran’s most vulnerable citizens, including women, children and patients.
In May 2018, the United States began unilaterally imposing sanctions on Iran after the former quit the Iran deal, officially called the Joint Comprehensive Plan of Action (JCPOA).
The sanctions, preserved under the Joe Biden administration, have restricted the financial channels needed 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 warfare”, “economic terrorism” and “medical terrorism”.