Treatment for haemophilia by calendar in HungaryBMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7098.1907 (Published 28 June 1997) Cite this as: BMJ 1997;314:1907
- Géza Sas, Chairman, Expert Committee of Hungarian Haematologistsa
Editor—Christopher A Ludlam suggests that in many places in the United Kingdom the strategy for treating patients with haemophilia is not determined by experts.1 As a result, treatment is determined by postcode. Unfortunately, the United Kingdom does not seem to be the only country to be doing this.
In Hungary since 1992 there has been a national programme for treating patients with congenital bleeding disorders. All patients and their data are registered in a computerised system at the national haemophilia centre. Regional centres treat the patients using the same principles and under the supervision of the national centre. Treatment with cryoprecipitated factor VIII was changed to virus inactivated plasma derived factor concentrates purchased mainly from abroad. As Hungary is not a rich country, the health system could not afford to buy recombinant factor VIII preparations, but with the centralised registration system each haemophilic patient could be treated with the same factor concentrate, even if he moved from one district to another, which decreased the risk of allergic reactions. Not one vial of concentrate had to be thrown away because it was past its expiry date because hospitals with more vials than they could use before a particular expiry date transferred them to another hospital that could use them before expiry. With these measures haemophilia could be treated on demand with 15 million units of factor VIII a year (1.5 U per person) in Hungary, a country with a population of 10.3 million.
Unfortunately, in 1996 new policy makers (mainly economists and jurists) considered that too much money had been spent on treating haemophilia and surmised that finances had been misused. After a formal hearing and advice from other countries an expert committee consisting of economists, jurists, and pharmacists–but not one doctor who had treated patients with haemophilia–decided what factor concentrates and how much should be purchased. As a result, Hungarian patients with haemophilia are now treated by calendar: we as doctors administer the factor VIII concentrates that are available. In some cases we have had to change concentrates more than four times in the past year. Moreover, making the situation even worse, the policy makers have refused to support financially the prenatal and carrier screening programme, which could have prevented the continuous growth in the number of people with haemophilia.
My final conclusion is that treatment for haemophilia by postcode or calendar has a common denominator: the lack of goodwill of policy makers to listen to those who treat haemophilic patients.