News from Parichehr Bahraini, HAE Iran

Donation of C1 Inhibitor Concentrate Delivered to Hereditary Angioedema Patients in Iran

The Immunodeficiency Patients Advocacy Association (IDPA), in collaboration with the Immunology, Asthma, and Allergy Research Institute (IAARI) and the Vitan Pharmed pharmaceutical company, successfully secured and distributed a donation of C1 Inhibitor concentrate to provide free treatment to eligible patients with Hereditary Angioedema (HAE) in Iran.

The C1 Inhibitor concentrate, which is the first-line therapy for managing and preventing HAE attacks, remains expensive and is not covered by insurance in Iran. This financial barrier limits the medication’s availability and affordability for most patients, as it is imported only in small quantities.

During this initiative, conducted about two months ago, IDPA arranged to supply a limited number of C1 Inhibitor vials – each valued at around 200 million Rials – free of charge to eligible patients, significantly easing the access challenge for those who need this critical medication.

Patients who received the medication were provided with detailed training on its proper use, including timing and administration during acute attacks. Each patient was also given written instructions to ensure safe and effective use of the drug.

At that time, patients were instructed to visit the IAARI clinic on Mondays or Wednesdays to obtain a prescription from Dr. Mohammad Reza Fazlollahi, an allergist and clinical immunologist, and then to collect the medication from the Children’s Medical Center pharmacy with this prescription.

This collaborative effort represented a key milestone in improving access to essential therapy for improving the quality of life for HAE patients in Iran. Meanwhile, ongoing efforts continue to secure insurance coverage to expand and sustain medication availability in the future.