CALL US NOW 020 7939 0780

Do I have a choice about what treatment I have for haemophilia?

Yes, you do have a choice. But doctors in the UK have guidelines that they have to follow and in most cases, any treatment you ask for has to come within the guidelines in order for you to have it. The guidelines are produced by NHS England. Prescribing in Wales and Northern Ireland generally follows the same guidelines. Scotland have their own guideline process but it’s unusual for them to differ very much from the NHS England guidelines.

The way these ‘commissioning guidelines’ work is quite complicated. They cover the ‘commissioning’ of treatments within the NHS. In this sense, commissioning really means what the NHS is prepared to pay for.

The guidelines are built around evidence that treatments work, of course. But they also allow for different brands of the same treatments to be made available. Currently there are three main brands that are provided to around 7 out of 10 patients. (So it makes up 70% of the prescriptions issued for a type of treatment for haemophilia A, for instance.) Other brands make up the rest.

Overall, the guidelines cover 8 out of 10 prescriptions for a given medical condition. So, there is scope for 2 out of every 10 patients to receive treatments that aren’t covered by the commissioning guidelines. Generally, treatments that aren’t within the commissioning guidelines are much more expensive.

Most people with severe haemophilia in the UK are on standard factor VIII or IX replacement, either on prophylaxis or on-demand treatment. Now there are the newer ‘extended half-life’ (EHL) factor VIII and IX available. There is a separate commissioning guideline covering these and it’s very strict. Basically, overall your treatment has to cost the same on EHL as it would on standard factor replacement.49 In practice, it’s become more difficult to switch to EHL factor because standard factor is cheaper than it used to be.