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24 September 2014
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Panorama: Access to cancer drugs should not depend on where patients live, says NICE chief


The Chief Executive of National Institute for Health and Clinical Excellence (NICE), Andrew Dillon, has weighed into the debate about expensive cancer drugs that have not been approved by NICE, saying access to them should not depend on where patients live.

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Dillion has called for a consistent approach from Primary Care Trusts (PCTs) when they consider whether to make funds available for medicines that have already been judged by NICE not to be cost-effective for the NHS.

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He tells the 91Èȱ¬'s Panorama programme: "What patients need to do... is to find out from those who are making the decision what the basis of that decision is, and if they don't think it's reasonable, if they don't think it compares appropriately with decisions that are taken elsewhere, ask why not."

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The Government has promised to speed up access to new drugs on the NHS and end the apparent unfairness of people being able to get medicines in some areas when they can't do in others.

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But how easy will that be to deliver? With NHS resources stretched, the health watchdog NICE will increasingly be forced to make decisions that patients and doctors find hard to take and locally PCT judgements on drug funding will continue to mean a string of winners and losers.

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Naomi Kiely was diagnosed with bowel cancer four years ago, aged just 30. Having responded well at first to chemotherapy, she recently discovered that the cancer has returned aggressively – an even more bitter blow as she's planning to get married next month.

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However, she took heart from her consultant who told her about Avastin – a new drug she could try with fewer side effects.

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Naomi was informed: "It won't affect your hair. You'll have the same quality of life and you will be a healthy person living with cancer who's getting chemo treatment but it's so targeted that it will only target the tumours. It won't target any of the good stuff in your body so you'll be able to get married, you'll be able to feel well."

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But there is a problem. Although Avastin has been licensed as an effective treatment for bowel cancer, it has not been approved for NHS use by NICE.

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NICE uses a complicated calculation to work out whether a drug is worth paying for. Basically the cost is weighed up against the benefit it is likely to bring and the result is called a Quality Adjusted Life Year (QALY).

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Because Avastin prolongs life by an average of just four months, its cost per QALY works out very high, at between £40,000 and £70,000.

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That is well above the £30,000 value-for-money benchmark NICE normally sets for new NHS drugs.

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Once a national decision has been taken that a drug is not cost effective, that is not necessarily the end of the story.

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Doctors can still apply on behalf of individual patients for exceptional funding from local health boards or PCTs.

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But this process is fuelling the postcode lottery the Government says it wants to get rid of.

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Naomi Kiely's consultant, Mark Saunders, became so concerned by these inequalities that he decided to analyse the exceptional funding decisions taken in north-west England over two years on three expensive cancer drugs.

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Among the PCTs that send patients to his unit, he has found the average approval rate pretty high at 75%.

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He says: "If you have a patient from Cheshire they have a very good record. Most of the time we apply to Cheshire they tend to fund patients that have exceptional circumstances. If we apply to the Manchester Primary Care Trust then in the eight applications we've made they've only accepted one for funding in 2006."

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Unfortunately for Naomi Kiely, she comes under Manchester PCT and her application has been turned down for funding.

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She was "horrified" by this decision: "When you need the NHS more than ever they're saying no, sorry you're in the wrong postcode. I thought are the PCT playing god? How poorly do I have to become for them to say actually we will give her this drug."

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In the programme, Andrew Dillon also hints that NICE may not be able to meet Health Secretary Alan Johnson's recent pledge to try to bring decision-making on new drugs down from an average length of two years to just three months.

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Mr Dillon was questioned about why it has taken NICE two-and-a-half years, without yet reaching a decision, to deliberate over the drug Lucentis.

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Many older people suffering from the eye condition Wet Age- related Macular Degeneration (Wet AMD) have been losing their sight as PCTs across England have chosen not to fund the treatment until NICE reaches a decision on Lucentis.

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Professor Jonathan Gibson, consultant ophthalmologist at Birmingham Eye Hospital, says Lucentis could save people suffering from Wet AMD.

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"Lucentis is a major breakthrough because for the first time we have a drug that not only stops the process and prevents the vision getting worse but in a substantial proportion of cases actually improves the vision."

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Yet in Scotland, where the Scottish Medicines Consortium (SMC) decides which drugs should be available on the NHS to Scottish patients, a decision was taken to approve Lucentis in just three months and patients have routinely been receiving the drug for over a year.

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Mr Dillon points out that, unlike the SMC, the NICE process involves public consultation and a formal appeals procedure which can slow down decision-making.

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On the issue of Lucentis, he told Panorama: "There may have been some things that possibly we could have done more rapidly and we may looking back, wanted to have started work on that particular topic earlier than we did. But we would always have taken longer than the position in Scotland."

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Notes to Editors

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Please note in any copy: This edition of Panorama, The NHS Postcode Lottery - It Could Be You, will be broadcast on 91Èȱ¬ÌýOne on Monday 18 August 2008 from 8.30 to 9.00pm.

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PH

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Category: News; 91Èȱ¬ One
Date: 18.08.2008
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