Why isn’t vismodegib recommended in the UK?

Vismodegib (also known as Erivedge) is a medication shown to have some benefits in basal cell cancer. It’s taken by mouth and is the first ‘hedgehog pathway inhibitor’ to be licensed for use. After it was licensed in the EU, it was prescribed for some patients with severe BCCs, including some people with Gorlin Syndrome.

However, in 2017, the use of vismodegib was reviewed by NICE (The National Institute For Health and Care Excellence, based in the UK), who recommended that new patients were not started on vismodegib.  NICE recommended that patients who were already on vismodegib could continue. Most NHS Trusts in the UK will follow NICE’s recommendations. Several other countries do likewise.

This recommendation may seem very unfair, particularly for people with Gorlin Syndrome, who experience life long BCCs. It may help to understand why the recommendation was made.

NICE reviews many different aspects of health care, from the very common, for example helping people to stop smoking, to the very rare, such as Gorlin Syndrome. NICE will recommend a drug or procedure it costs less than £30,000 per each year of good quality life (called a QALY). Smoking cessation support costs about £400 for each QALY, whereas NICE estimated that vismodegib costs between £100,000 and 4 million pounds per QALY. When you look at the numbers, it’s not surprising that NICE did not recommend vismogedib.

Why does vismodegib cost so much? The drug actually costs the UK Health Service about £75,000 per year. However, not everybody’s BCCs benefit from the vismodegib and many people have to stop taking it because of side effects. These factors push up the cost per QALY.

Did NICE make the right decision?

NICE can be criticised because the data they took into account were mainly from people with one – off BCCs, not people with Gorlin Syndrome. If data on people with Gorlin Syndrome had been available, then the costs may have worked out differently (this is because people with Gorlin Syndrome have got more to gain by having existing BCCs treated and, potentially, new BCCs prevented). So it’s good news that some of the new trials are being done on people with Gorlin Syndrome.

It’s also possible that the manufacturers will reduce the cost of the drug, in which case NICE would review their recommendation.