In the Name of God
To the minister of health and medical education of the Islamic Republic of Iran
With regards, we the board of directors at the Iranian Hemophilia Society (IHS) express great concern in regards to the tragic shortage of factor concentrates throughout Iran, and see it as our duty to warn you of the fact that many years of hard work in providing such products and preventing disabilities among Iranian hemophiliacs may be lost. Currently this shortage has put the health and lives of hemophiliacs at grave risk.
Unfortunately despite the saying by our supreme leader that “no patient must bear any more suffering than the disease itself”, Iranian Hemophiliacs are enduring much harder conditions due to the shortage of their medication. In spite of your promise that the Iranian hemophiliacs will receive 2 units per capita of factor concentrates in the current year, not only that promise has not been fulfilled but also their condition has deteriorated. In the current situation the patients’ health and lives are at grave risk. The least side effect of such shortages, even in the short run, will be irreparable physical disabilities for hemophiliacs, especially young children. The recent shortage of factor concentrates has lead to the issuing of multiple directives preventing elective surgeries in the past 20 days. Yet these directives have also failed to relieve the crisis. Imam Khomeini Hospital as the largest center for hemophilia care in Tehran is unable to offer pharmaceutical services for the patients. In the past few days a new wave of patients have accepted the added difficulties of intercity travel and unsuccessfully turned to Tehran in hope of finding treatment. Unfortunately such conditions have once again spread a sense of uncertainty among hemophiliacs, causing them to fear their future treatment status.
Based on our previous knowledge of your management schemes and personal emphasis on the issue, which is truly admirable and has not been over looked by the patients, the Iranian hemophilia community expects swift decisions and effective directives to relieve the current crisis. Also one must ask why such conditions recur and why hemophiliacs go through this added misery despite comprehensive programs set out by that ministry, and action must be taken so that similar crises are prevented in the future.
We thank you in advance for your dedication to the treatment of hemophiliacs.
Iranian Hemophilia Society
Board of Directors
20 Sep 2008