Elnaz Yari, the director of the Hemophilia Center of Tehran Province, noted that 14,000 hemophilia patients are registered in the country. She emphasized the provision of medication as the primary need of these patients and stated that this center has experienced one of the most challenging periods in recent years in terms of supplying hemophilia medications.
In an interview with the regime’s ISNA news agency, the director of the Hemophilia Center of Tehran Province mentioned that out of the 14,000 hemophilia patients in the country, 4,000 are in Tehran. She added that there are probably patients in the country, especially in deprived areas like Sistan and Baluchestan Province (where consanguineous marriages are common), who have not been identified yet.
Yari stated that providing medication is a challenge for all patients and emphasized that hemophilia is a special condition, making the provision of medication the most significant challenge for these patients.
She noted that in 2023, the shortage and unavailability of Factor VIII caused problems for patients, and currently, there is a shortage of “Factor XIII,” “fibrinogen,” and “Humate.”
Ahmad Ghavidel, an advisor to the board of directors of the Iran Hemophilia Society, said on July 24 that in the past three years, hemophilia patients have experienced the worst years in terms of medication shortages.
He said, “In fact, the situation was even worse than during the war.”
Amin Afshar, the chairman of the board of the Iran Hemophilia Society, also reported on the same day that three hemophilia patients, including two young adults and a child, have died since the beginning of this year due to medication shortages.
According to Afshar, the medication shortages that existed in rural areas have now reached Tehran.
Nazanin Farzadi-Far, the CEO of the Iran Hemophilia Society, stated in December 2023 that in 2022, the domestic production of medication significantly decreased, and she mentioned, “We had a very difficult autumn and winter in terms of medication.”
The director of the Hemophilia Center of Tehran Province emphasized that the shortage of these medications has caused problems for pregnant women. She said, “Fibrinogen patients are considered the mildest cases of hemophilia, such that they need to use fibrinogen medication in situations like nosebleeds, gum surgery, or tooth extractions. Unfortunately, fibrinogen medication is not available, and this causes irreparable harm.”
Amir-Hesam Alirezaei, the head of the Transplantation and Disease Treatment Management Center at the Ministry of Health, said in an interview with ISNA in March 2024 that approximately 14,000 patients are registered in the national hemophilia system. He added, “Among these, there are 5,500 cases of Factor VIII deficiency hemophilia, 1,892 cases of von Willebrand disease, and 1,200 cases of Factor IX deficiency hemophilia and other bleeding disorders.”
