The History of Haemophilia Diagnosis & Care in Iran
Until the mid-1960s, the laboratory diagnosis of haemophilia and related bleeding disorders, was not possible in Iran. Treatment was equally primitive, being confined to the grossly inadequate administration of fresh whole blood of dubious quality, purchased from commercial blood sellers.
By 1966 however, a rudimentary laboratory diagnostic capability was established at the main Tehran University Hospital Haematology Department, and a home-made form of replacement therapy ("Cryoprecipitated" factor VIII, made from human plasma) was utilized to carry out a series of major surgical operations, at a time when commercial coagulation concentrates were not widely available, even in Europe or the USA.
In 1971, the World Federation of Haemophilia (WFH) agreed to hold their international congress in Tehran - the first time such a meeting had ever been held outside Europe or America. This was a ground-breaking meeting in other ways as well, in that the main thrust of the Congress emphasized the impossibility of providing comprehensive haemophilia care without the close support of a safe, modern blood transfusion service, which formed an integral part of the national health services. Indeed, this was to be the spur for the creation of the National Iranian Blood Transfusion Service a few years later - a service based entirely upon voluntary, non-remunerated blood donation, rather than the anaemic, disease-ridden professional blood donors who were the only source of blood for transfusion, throughout Iran before 1974.
Even in the 1970s, it was clear that support for the haemophilic population could not remain confined to doctors and scientists alone. There had to be at least a minimal participation by parents of affected children and the patients themselves. Efforts to establish a viable Haemophilia Society remained unfulfilled for many years.
It is a source of satisfaction that today, over thirty years later, a strong Iranian Haemophilia Society has been created which is devoted to the interests of patients and their families; which defends their rights as citizens, and acts as their advocate at both national and international levels. The Society (IHS) has not merely confined its efforts to the usual range of activities typical of similar societies elsewhere: social services; providing information leaflets to patients; counseling affected families…. It has gone further by creating the only haemophilia comprehensive, interdisciplinary care centre in Iran as well.
Haemophilia Care Centre
The Iranian Haemophilia Comprehensive Care Centre in Tehran, which was inaugurated in April, 2001, comprises some 2000 square metres on four floors, and represents a capital expenditure of at least $2.7 million Dollars provided entirely through charitable donations, although the aggregate value of the services it renders to society, far exceed this figure in material terms.