NICE leaves many patients with rarer forms of cancer without drugs

People with rarer cancers 'still denied access to treatments'

The National Institute for Health and Clinical Excellence (NICE) is failing to follow its own guidance aimed at making live-extending treatments available on the NHS, leaving many patients with rarer forms of cancer without drugs that could prolong their lives, a campaign group has said.

The Rarer Cancers Forum looked at recent progress made in improving access to treatment for people with 'rarer cancers' - an umbrella term encompassing between 30 and 50 per cent of all cancers.

Its 'Exceptional Progress?' report suggests that, while five treatments have been approved since the publication of new supplementary advice from the National Institute for Health and Clinical Excellence (NICE) on appraising life-extending drugs, four treatments that could have benefited up to 16,000 patients have been rejected during the same period.

These treatments are bevacizumab, sorafenib, sunitinib and temsirolimus - all of which can be used to treat advanced kidney cancer.

Sorafenib and temsirolimus were rejected even though end of life criteria were fulfilled, with NICE claiming that the cost of the drugs was too high to justify their use on the NHS at the expense of other cancer treatments.

As well as failing to follow the recommendations made following the top-up review, the Rarer Cancer Forum is concerned that NICE is still not assessing drugs quickly enough.

In November 2008, the government announced that by 2010, NICE would take just six months to assess new cancer drugs by 2010, but the report shows that the institute typically still takes 21 months.

It also reveals that over 1,000 patients a year with rare cancers have to plead with NHS managers to obtain the drugs they need.

Sixty per cent of patients said that they could not understand their primary care trust's cancer policy, while 49 per cent did not know how long they should expect to wait for a decision on their treatment.

Andrew Wilson, chief executive of the Rarer Cancers Forum, commented: "Although progress has been made in improving access to cancer treatments since the publication of the top-ups review, there is still more to do.

"It is unacceptable that many thousands of patients are still missing out on the treatment they need, and which their doctors want to give them, because NICE has decided that their treatment does not meet some arbitrary criteria."

Mr Wilson called for an "urgent" review of the processes used by NICE to assess new drugs, insisting that more patients should have benefitted from the changes.

He noted: "Some positive steps have been taken, but on access to end-of-life treatments, near-label medicines and on the speed of NICE decision-making, more action needs to be taken."

Professor Peter Johnson, Cancer Research UK's chief clinician, said: "We're disappointed that the new 'end of life' criteria agreed with NICE are still not giving patients with less common cancers access to treatments that are routine in other parts of the world, that the process for seeking approval is still so unclear and that NICE is still taking too long to make decisions.

"These decisions are being made for a small group of patients and have little impact on the NHS budget. The Department of Health needs to consider better ways of making decisions about drugs for rarer cancers."