Why does my treatment sometimes change?
Many people with haemophilia have been on the same treatment for years. They may not want to switch because their treatment is successful and they feel safe on it. Some are worried about switching because they feel it may increase their risk of developing inhibitors. If the commissioning guidelines have changed, their centre want them to switch to a new product and they may want to stay on the old one.
Other people would like to switch to another type of standard factor replacement for a variety of reasons. Some kits are easier to mix, for example – particularly if a joint bleed means that you’ve got some mobility problems with your elbow or wrist. Sometimes, one product suits someone better than another and they have fewer bleeds.
People may want to switch to one of the newer extended half-life factors so that they can have fewer injections either for prophylaxis or to get a bleed under control.27,28 A few people were on EHL factor when it was being researched but were asked to switch back to the cheaper standard treatment.
It can be very difficult to change products or regimen because your treatment centre has control over the product you have, the dose you have and how often you have it (the frequency), which they must prescribe in line with national guidelines. If you wish to use a product outside of national guidelines you will need a strong argument. For example, you may need to show that switching to another product would make a major difference to your quality of life, because of work or your participation in sports, for instance. In that case you will need to discuss and make your case to your consultant. It helps if you can document situations when changing treatment would make a real difference to you. So, for example, showing how one mixing kit is more suitable for you. Or how having treatment less often would cause fewer problems for you at work.
Doctors will generally do all they can to help people who want to switch, but are sometimes prevented by NHS guidelines.
If all else fails and you really want to change treatment, you could consider changing centres. You have the right to be treated at any centre in your home country within the UK (so, if you’re English, any centre in England for example). This is a big decision if you’ve always been at the same centre – you know them and they know you. But it is a move that some people are prepared to make.