Page last updated at 04:56 GMT, Wednesday, 5 May 2010 05:56 UK

A raw deal for patients with the 'wrong cancer'

Professor Jane Maher
Professor Jane Maher
Chief medical officer at Macmillan Cancer Support

New and innovative drugs to treat cancer are being developed at an ever-increasing rate, which is of course a good thing.

Distressed man. Pic: Joti/SPL
Some people are left trying to fund their own treatment

But this puts an ever increasing pressure on NHS budgets and in this week's Scrubbing Up, Professor Jane Maher warns that patients with rarer cancers may be being squeezed out.

Over the past decade developments have revolutionised both the treatment and the perception of cancer.

Cancer is no longer an automatic death sentence but a chronic or entirely beatable disease.

However, improvements haven't been uniform across different types of cancer.

This can leave some people with rarer cancers with no treatment options at all

For example, women diagnosed with a rarer cancer like kidney cancer have only a 43% chance of living for five years in comparison to a 79% chance for breast cancer patients.

And often even when there is an effective treatment for a rarer cancer, patients can't access it because the National Institute for Health and Clinical Excellence (NICE), the body that decides which drugs should become available on the NHS, has not deemed it cost-effective.

This can leave some people with rarer cancers with no treatment options at all.

The huge public debate on cancer drug "top-ups" last year led NICE to create a new set of guidelines to encourage greater flexibility when deciding the cost-effectiveness of end-of-life drugs.

We had hoped and expected that this would mean more drugs for rarer cancers would become widely available but instead many new and innovative treatments have been rejected for use on the NHS. This includes three drugs for kidney cancer and a drug for the treatment of advanced liver cancer.

The challenge we face is that drug treatments for rarer cancers often have high development costs but are only suitable for a relatively small number of people.

This means they are expensive in comparison to drugs for more common cancers and have more difficulty passing the current "cost-effectiveness" test used by NICE. The process also completely overlooks the smaller total cost of these drugs to the NHS.

I would rather see the NHS put more money into improving palliative care services

So a conundrum presents itself. Research and innovation has the potential to vastly improve survival rates but NICE is preventing patients from accessing new drugs.

While the end-of-life guidelines have improved access for some, the rejection of other treatments has meant absolute despair for others.

As drugs become more personalised and targeted they will be suitable for a smaller number of people, costs will rise and with that, so will rejections. If we don't want cancer survival to be based on the luck of the draw of what type of cancer you get, this situation is untenable.

For people needing a treatment not rubber stamped by NICE, the only option, aside from paying for it themselves, is to go through the practically and emotionally difficult process of Exceptional Funding. This is where patients can apply to their Primary Care Trust (PCT) to fund a drug that NICE has turned down.

Hopes dashed

But a lack of clinical expertise and the immense pressure on PCT staff to reduce budgets means that the odds are often stacked against patients. In many cases, after a long and stressful wait, hopes are dashed and access to life-prolonging treatment denied.

It is clear that the current one-size-fits-all approach to evaluating treatments needs to change.

The new guidelines should have lead to greater flexibility in terms of what is deemed "cost-effective" but in practice, one rigid cost-effective threshold has been replaced by another. What we need is a system that is genuinely flexible and based on what is valuable to patients.

The NICE process may seem complicated but the issue is simple.

People do not choose which type of cancer they get and should not be ruled out for having the wrong kind of cancer.

Innovation of all kinds has to be embraced by the next government in order to end unfair inequality in access to cancer drugs and improve survival rates.

To do this, NICE and our whole approach to valuing new drugs has to evolve. This is not a matter of minor significance but of life and death and is all part of a journey that may eventually bring us to the ultimate goal of curing cancer.

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