Iran’s Ministry of Health has announced plans to increase financial support for patients with rare diseases, including hemophilia, signaling a concerted effort to improve access to treatment and care across the country.

The announcement was made by Amir-Hesam Alirezaei, a health ministry official, on April 17, marking World Hemophilia Day. The observance this year carried the theme “Equitable access for all: recognizing all bleeding disorders,” emphasizing the importance of ensuring care accessibility regardless of the specific bleeding disorder, patient demographics, or geographic location.

Hemophilia, a genetic bleeding disorder predominantly affecting males, occurs in approximately one in every 5,000 male births. It is characterized by a deficiency in clotting factors that prevent proper blood coagulation. Patients with the condition are susceptible to spontaneous internal bleeding, particularly in joints, which can lead to chronic pain and joint damage. Severe bleeding episodes in vital organs such as the brain can result in seizures, paralysis, or death if untreated.

Currently, about 14,000 patients with hemophilia are registered in Iran, including roughly 5,500 with hemophilia A (factor VIII deficiency), 1,200 with hemophilia B (factor IX deficiency), and nearly 1,900 with von Willebrand disease (VWD), a related bleeding disorder. The highest prevalence of these conditions has been reported in Tehran, Mashhad, Shiraz, Isfahan, Ahvaz, Zahedan, and Alborz provinces.

Alirezaei highlighted that domestic production currently meets the country’s demand for hemophilia A and B medications, with quality standards approved by Iran’s Food and Drug Administration. Clotting factor treatments are fully covered by insurance, and plans are underway to extend insurance coverage to HEMLIBRA, a treatment for severe hemophilia A cases.

The ministry noted that 78 blood transfusion units within state hospitals offer comprehensive services including clotting factor injections, specialized diagnostic tests, rehabilitation, and dental care tailored for patients with bleeding disorders to improve their quality of life.

Beyond hemophilia, Iran has identified 442 rare diseases nationally, based on data from the Rare Disease Foundation. These conditions are typically extremely rare, sometimes affecting only one or two individuals in the country. Notable diseases among this group include epidermolysis bullosa (“butterfly skin”), spinal muscular atrophy (SMA), metabolic disorders, autism, and various dystrophies.

Funding for rare disease treatment has risen significantly in recent years. In the Iranian calendar year ending March 20, 2023, approximately 50 trillion rials (around $100 million) were allocated, increasing to 70 trillion rials this year. Health authorities project that the budget required to meet the needs of rare disease patients—including medicines and medical equipment—could reach between 150 trillion to 180 trillion rials (estimated $300 million) for the current year starting March 21.

These funding increases reflect an enhanced governmental commitment to address the specialized needs of rare disease patients, improve equitable access to care, and support domestic pharmaceutical production to safeguard treatment availability.