Brain tumour patients denied life-extending drug in ‘postcode lottery’

A drug that can extend the lives of brain tumour patients is being withheld by some NHS Trusts on the grounds of cost.

The agent, 5-Aminolevulinic Acid or 5-ALA, is given to patients in parts of the UK ahead of surgery to remove certain types of high-grade (malignant) brain tumour.

Known as the 'pink drink', 5-ALA makes brain tumour cells glow under fluorescent light. It enables surgeons to identify and remove more cancerous tissue than they could do otherwise and significantly improves a patient's chance of being left with no detectable brain tumour cells.

Studies have shown that patients given 5-ALA ahead of surgery for glioblastoma are likely to survive for longer with no recurrence of their disease than those who undergo surgery without the drug. But a survey by Stephen Price, consultant neurosurgeon at Addenbrookes Hospital in Cambridge, has revealed that NHS trusts in some areas are refusing to pay for the drug under any circumstances. Others have restricted its use to a limited number of patients.

In our newly-launched Patient Guide, which sets out what anyone diagnosed with a brain tumour should expect from the NHS, we urge patients to ask about the 'pink drink' ahead of surgery for a glioblastoma or others types of high-grade glioma.

The drug costs about £1,000 per patient and has been judged as cost effective under the criteria used by the National Institute for Health and Care Excellence (NICE). However, NICE has not carried out a technology appraisal of 5-ALA or issued guidance for its use. The drug is not commissioned nationally through NHS England specialised commissioning.

Around half of all patients diagnosed with glioblastoma in the UK every year are judged suitable for surgical 'resection' – that is, an operation to remove as much of their tumour as possible.

Mr Price said: “There is very clear evidence that better surgical resection is the only factor we can influence when it comes to improving glioblastoma survival. Studies have shown that without 5-ALA, around 35% of patients are left with no evidence of residual cancer cells after surgery.

“In patients who are given 5-ALA, that figure is around 65% on average – and in the best-performing units it rises to 80% or even 90%."

Mr Price, who introduced 5-ALA fluorescence guided surgery to Addenbrookes and teaches other surgeons how to use it effectively, said there were initially barriers to its widespread administration around the UK. These included a lack of training for neurosurgeons and the need for specialist microscope equipment to use the drug effectively.

However, he said, both of those problems were almost fully resolved. “The biggest issue now is the cost of the drug. Requests for the use of 5-ALA have to go through a trust's Drugs and Therapeutics Committee. Even though it's a one-off drug, there seems to be in the NHS at the moment this barrier that doesn't allow any new treatments through."