One view of what NICE is, and how it decides in the UK

Laurel · 03-15-2009, 07:50 AM

Sadly, I fear this is our way...

Christine MH-UK · 03-26-2009, 03:56 AM

You have provided a generally accurate description of what NICE is and does, but it should be noted that the NICE guidance for herceptin doesn't completely block the use of herceptin for stage IV patients. What is states is "For patients who are receiving treatment with trastuzumab for advanced breast cancer, discontinue treatment with trastuzumab at the time of disease progression outside the central nervous system. Do not discontinue trastuzumab if disease progression is within the central nervous system alone," which is rather different from what you state.

It should also be added, too, that NICE feeds into a general culture of delay. As you mention, it is designed to provide guidance. Technically, the primary care trusts can prescribe drugs after they are licensed but before NICE has provided guidance on whether they should be used. In practice, the PCTs generally tend to drag their heels and many may not just wait until NICE has ruled but delay introducing the drug for as long as possible thereafter.

It's not just that QALY is used, but also that the figure is so appalling low that is the problem. I don't think that many people in Britain are aware that NICE has put a value on a full-quality year of life at just 20,000-30,000 pounds. The figures used are at about the same level as annual median earnings for individuals, so don't even include activities that have an economic value but aren't included in income, such as volunteer work and essential caring activities. I have heard that some US insurers use QALY figures to decide what to cover, but the values used are at least 100,000 dollars a year, which is over twice individual annual median earnings, and that these can go up to 200,000 a year in practice. I don't know where the cutoff should be, but 20,000-30,000 pounds just doesn't make any sense. I think the QALY estimate for Tyverb/Tykerb was £60,000/year, so I don't see it coming into use in Britain any time soon.

Another aspect I think that has to be taken into account is that cost is only half of cost effectiveness. If Tykerb cured stage IV cancer, Glaxo could charge an arm and a leg for it and patients could still get it under QALY rules.

Ellie F · 03-26-2009, 05:00 AM

Hi Christine,totally agree with what you have said about NICE. Have just had a second opinion about my bc at a UK centre of excellence. Interestingly the oncologists there are challenging the decision not to authorise tykerb and are also very unhappy about the decisions regarding herceptin for advanced breast cancer.He encouraged us to continue the petition and try to get more political support . Ellie

03-26-2009, 08:35 AM

Please take a look at my post in the Petition thread at http://www.her2support.org/vbulletin...6&postcount=29.

Exactly what I have said we need the oxygen of publicity, we need every single UK resident to contact their MP to to something about this. There is nothing that any individual can to do change what NICE does, it is governed by what they are required to do by the government. The only people who can appeal the NICE deterimation (as it is currently called) are those consultees in the process so we have to hope some or all of them will.

As to the comment re herceptin being used for treating the central nervous system it is well known that herceptin does not cross the blood brain barrier and so why continue to use it for the central nervous system when tykerb is a better drug.

Ellie F · 03-26-2009, 10:26 AM

Agree the issue of herceptin, NICE and CNS seems to make no sense at all when research shows tykerb is more effective. It doesn't even seem to make economic sense!