Blow for new extended half-life product

Written by Sam Wilson, May 17, 2024

We’re extremely disappointed to learn that a new extended half-life product for haemophilia A will not yet be commissioned by NHS England following a negative decision by NICE, the body which provides national health guidance and advice.

Efanesoctocog alfa (known as Altuvoct), a super-extended factor VIII replacement therapy made by Sobi, has a far longer half-life than existing standard or extended half-life factor VIII products, so-called because of the amount of time it takes the level of the drug in the bloodstream to reduce by half.

If NICE’s decision had been positive, efanesoctocog alfa could have been in use in the NHS within 90 days. Instead, NICE has now asked for comments on its decision and its guidance. It may change its decision on this product as a result of this consultation, but the timetable for this is not clear.

As efanesoctocog alfa has an extended half-life it would need to be infused less often than current factor replacement therapies, potentially once a week or less, which would significantly reduce the treatment burden. It could provide higher levels of protection from further joint damage and bleeds because the product stays in the bloodstream for longer.

We know that many people in the community are eager to see this as a treatment option.

Clive Smith, Chair of the Haemophilia Society (THS), said: ‘It is frustrating that this innovative treatment, which has the potential to significantly improve the quality of life for people with haemophilia A, has been delayed and will not be available on the NHS as soon as it could be. We are concerned that information used to form NICE’s decision was not fully shared with us and as a result we did not have the involvement that we would expect as the patient organisation. It is important NICE’s decision makers understand the positive impact this product could have on our community.’

THS will be contributing to NICE’s consultation, which closes on 10 June.