Drug Shortage; Hemophilia Association of Khuzestan Criticizes 'Lack of Planning by the Ministry of Health'

On Wednesday, August 4, the Rava News Network reported that "these days, hemophilia patients in many areas are facing problems obtaining their necessary medication" and added that these patients must search tirelessly to secure their required drugs. The issue of shortages of specific medications in Iran has intensified in recent months. In this regard, families of hemophilia patients have gathered several times in front of the Ministry of Health building in Tehran, demanding the resignation of the head of the Food and Drug Organization and the Minister of Health. Official statistics indicate that there are about 13,000 hemophilia patients in Iran, and according to the chairman of the board of the Iranian Hemophilia Association, an additional 2,000 patients may be added to this number. The problem of drug shortages for specific diseases in Iran is not new. Field reports indicate that the efforts of patients and their families to obtain medication over the past eight months have clearly hit a dead end, and sometimes they can barely procure four vials out of the required twenty vials of medication. According to the director of the Hemophilia Association of Khuzestan, the necessary medications are administered "only after bleeding" for patients, and even in these circumstances, there is not enough medication available, which gradually leads to mobility disabilities in patients. Health officials of the Islamic Republic have always cited sanctions as the reason for the drug shortage, but Ashraf Faramarzianpour, the director of the Hemophilia Association of Khuzestan, told ISNA that the main reason for the shortage is the "lack of planning by the Ministry of Health in drug storage." In May of this year, members of the Medical Commission of the Islamic Consultative Assembly asked the Minister of Health to take action to address the shortage of hemophilia medication. Additionally, the chairman of the board of the Iranian Hemophilia Association wrote an open letter to the Minister of Health, criticizing the company "Saman Darouye Hashtom" for its failure to supply "Factor 8" medication for hemophilia patients and the Ministry of Health for its lack of oversight on medication supply for hemophilia patients. The Darouyar plan, the government's initiative to target drug subsidies aimed at addressing drug shortages and reducing out-of-pocket expenses for citizens, has also failed. The General Inspection Organization of the country identified the lack of coordination among policymakers and executive managers and the unpreparedness of infrastructure as the cause of this failure. Ebrahim Masoudi-Asl, the chief inspector of health and medical affairs at the General Inspection Organization, stated in a television program broadcast on the "Ofogh" network that one of the main reasons for the drug shortage is the issue of "cost price reform," which he said has faced "delays." This official deemed this delay as "deviation from the proper implementation of the law." Bahram Einollahi, the Minister of Health in the Raisi administration, has repeatedly denied the drug shortage in Iran. He emphasized that "about 98%" of the country's required medications are produced domestically and defended the Darouyar plan. This plan had a budget allocation of 69 trillion tomans in this year's budget, which has decreased by four trillion tomans compared to the previous year. The former CEO of the Iranian Hemophilia Association stated in an interview with the "Te'adil" newspaper that health officials have removed hemophilia medication from the import list under the pretext of domestic production and do not allow new medications to enter the country. Meanwhile, many doctors say that some domestically produced medications do not have the necessary efficacy. The first gene therapy for hemophilia was recently approved by the U.S. Food and Drug Administration. The drug "Rocatawin" was approved for individuals with severe hemophilia A. Hemophilia is caused by mutations that prevent the production of proteins necessary for blood clotting. Severe type A hemophilia is the most severe form of this disease, and some patients experience bleeding even without any injury, and if untreated, bleeding can infiltrate joints and organs, including the brain. The drug "Rocatawin" uses an inactive virus produced in the laboratory to deliver a replacement gene to liver cells that produce the clotting protein, enabling patients to produce the protein themselves. Individuals with hemophilia can lead relatively normal lives if they have access to appropriate medical care. This report was compiled using domestic Iranian media, Reuters news agency, and social media. Following the declaration of a "drug crisis" status; the Minister of Health: We have eliminated the factors causing drug shortages. Drug, a fire under the ashes; drug shortages have become critical. A police official reported; 40 million units of "rare medication" were discovered. One cannot become ill; there is no medication or it is expensive. The drug crisis for thalassemia patients; Iranian medications do not work on patients.