When you are new to bleeding disorders it can be scary to hear about all the infections which have been associated with treatment in the past.
The experience of HIV, Hepatitis and CJD in particular makes us all very aware of the importance of the safety of blood products and other treatments for bleeding disorders. It is a vital that as a community we stay vigilant. However, at the moment we are not aware of any specific infection risks associated with any treatment for a bleeding disorders used in Scotland.
Since the contaminated blood disaster started in the 1970s and 1980s there have been some significant changes to how the safety of treatments are monitored. One of the most important changes is that it is now possible for any patient taking any treatment (not just for bleeding disorders) to go to The YellowCard Centre Scotland and make an official report if they experience a suspected side effects of any medicines or therapy – even from a herbal remedy. The different ways of making a report are set out on The YellowCard Centre Scotland website.
Haemophilia Scotland strongly suggests that if you have a bleeding disorder and are experiencing side effects from any medicine that you should talk to your Haemophilia Centre in the first instance. They may choose to make a YellowCard report on your behalf but it is a an important sign of how medicine is changing that you can make one yourself.
All the reports are routinely analysed to look for trends and patterns. In this way it is hoped that any problems with treatments can be spotted earlier and action taken to protect patients.
The European Haemophilia Network (EUHANET) also has a project to monitor adverse effects across Europe. The European Haemophilia Safety Surveillance (EUHASS) project is a pharmacovigilance program to monitor the safety of treatments for people with inherited bleeding disorders in Europe. Haemophilia treatment centres report adverse events directly to the EUHASS website and regular surveillance reports are produced. There is also a Rapid Alert System to make centres aware when there are problems.