September 24, 2008

Does a Drug Postcode Lottery Mean UK Puts a Price on Life?

By Emma Brady

Considering the current state of Britain's housing market, anyone hoping to make a sale must be desperate to move.

Stephen Allen was so desperate that in a short space of time he moved from both Worcestershire and the Black Country because his local primary care trusts would not fund kidney cancer drug Sutent (sunitinib) - which cost more than pounds 3,000 a course.

The trust stated it was too expensive to justify the extra months of life he might get.

But when he moved a further 17 miles away, to Birmingham, he came under the care of Professor Nick James at the Queen Elizabeth Hospital, who is no stranger to helping cancer patients get the drugs they need.

Prof James, professor of clinical oncology at Cancer Research UK Institute for Cancer Studies at Birmingham University, knows of "at least ten patients" who have moved to Birmingham or use a friend's city postcode to access new treatments.

"The attitude of PCTs outside Birmingham, to patients without a Birmingham postcode, seems to be one of 'We're not going to spend money on them if we don't have to'," he said.

"Often the only option for these patients is to buy the drugs themselves, but the cost can be prohibitive and moving is usually the cheaper option, but then they can be perceived as private patients, which can complicate the issue.

"Birmingham has a fantastic, proactive approach to getting new drugs to the patients who need them, but outside the city trusts don't think of them as people who need urgent treatment, instead they only see them as pounds, shillings and pence they have to spend."

The Pan Birmingham Cancer Network brings together six PCTs, six hospital trusts, four hospices, NHS West Midlands and a number of voluntary bodies to help patients access necessary treatment. It is one of 30 set up under the NHS Cancer Plan, drawn up in 2001.

Prof James recently published a study on 79 of his kidney cancer patients who needed either Sutent or Nexavar (sofarenib), which showed a stark difference in mortality rates between those who managed to get the drugs and those who did not.

A total of 43 people were prescribed Sutent (six of which were self-funded), but 21 were refused treatment by the PCT. Eight of those who received treatment (18.6 per cent) died, compared to two thirds (66.6 per cent) of the patients who were not prescribed the drug.

His figures for patients given Nexavar produced similar results: Three (33.3 per cent) of those given the drug died, against eight of the 12 (75 per cent) of those who did not.

So the claims, by Professor Karol Sikora, that cancer drugs could swallow more than half the NHS budget, which currently tops pounds 100 billion, within four years have forced campaigners, scientists and commissioners alike to look at how cancer care is funded in future.

Dr Richard Taylor, a Worcestershire GP now an Independent MP for Wyre Forest, wants to see a public debate to decide what should be funded .

"I wish people would look at this in a sensible way, because the NHS is never going to be able to afford everything," he said.

"There's a very strong feeling that with all the attention that cancer gets, other lesser known and rare conditions seem to attract very little research or investment because the cancer lobby is so strong it's grabbing all the attention - and money.

"I've had three patients come to me needing Sutent. Two have not been considered exceptional by Worcestershire PCT and I'm currently fighting for a third, a young mother, but in reality they're all deserving, exceptional cases."

That is not a view shared by the Government's medicines watchdog, the National Institute for Clinical Excellence (Nice), which in its controversial decision not to fund four new kidney cancer drugs, ruled that patients cannot rely on the NHS to save their lives if the cost of doing so is too great.

It had been under pressure from the drug industry to apply the "rule of rescue" to such cases, setting aside costs in instances where treatment is necessary to save life.

But Nice stated that spending too much on one patient may deny others.

Its report said: "When there are limited resources, applying the 'rule of rescue' may mean other people will not have the care or treatment they need.".

PCT commissioners, who decide how to best spend the trust's budget and are bound by Nice's recommendations, admit that the price of new drugs - pushed up by pharmaceutical firms to recoup research costs - are often prohibitive, Professor Lawrence Young, head of the College of Medical and Dental Services at Birmingham University and the CRUK Instititue for Cancer Research, claims some innovations - such as the recent introduction of the HPV vaccinations against cervical cancer for teenage girls - may not be as cost-effective as existing therapies.

"Of course I think more should be spent on cancer research and drug development because people with this disease, which was tantamount to a death sentence not so long ago, are living longer and with a better quality of life," he said.

"Obviously our main worry is if there is enough financial support for the research being done into new treatments?

There is always a comparison of how many hip replacements or heart transplants that money would provide?

"We have a really effective cervical cancer screening programme in Britain, yet the HPV jab has just been introduced. Is that really going to result in significant savings?

Will it really save more lives than the existing screening regime of cervical smears?"

He added: "There are real issues here which is what comes of having a growing, ageing population, and the NHS is about maintaining quality of life rather than how long they live, so we need to look at providing medication which is often much cheaper.

"But Nice, in my opinion, has changed from being a regulator to gatekeeper, and it's very confused about what its role should be."

While PCTs are bound to meet any recommendations Nice make within three months, there can be a grey area between when a drug is marketed and when it is granted approval, if at all, by the watchdog.

And this is part of the problem trust bosses face.

Birmingham East and North PCT currently spends about pounds 1,316 per person on healthcare services.

For each pound it spends 55p goes on drugs and frontline treatment, both in general and acute settings.

By the end of 2007/08 the trust will have spent nearly pounds 70 million on drugs and frontline treatment, but a spokesman was keen to add that "this figure does not cover all drugs".

She added: "Due to the nature of NHS charging, we have no way of knowing how much of that is spent on drugs because the trusts who carry out the treatment do not provide us with that detail."

However Tony Ruffell, the trust's director of strategy and redesign, believes that when a new drug comes on to the market, it may be hailed as a cure by the media, leading patients to seek yet- to-be approved treatments from their GPs or consultants.

"There is certainly a challenge facing commissioners but the NHS has fallen victim to its own successes," he said.

"The range of interventions available within the NHS have changed completely in the past 15 or so years which we now take for granted without thinking about it, but the recent explosion of new drugs has led patients and doctors to demand the latest treatment.

"The downside is that drug companies invest in many clinical trials, a significant number of which are not successful, so they have to recoup their research costs which is why new drugs are so expensive."

The Budget

In 2007/08, BEN PCT spent an average of pounds 1,316 per person on local healthcare services.

This is how every penny onm the pound is spent by the trust:

44p - General and acute: All hospital treatment provided for BEN PCT patients by acute trusts. Not just cost of drugs but all other related treatment costs Total spent in 2007/08: pounds 4.2 million

12p - Community health services

11p - Prescribing costs: Covers all drugs prescribed by GPs in the trust area. Total spent in 2007/08: pounds 65 million

10p - Mental illness

10p - Services provided by family doctors

4p - Learning diculties

3p - Maternity

3p - Other contractual costs

2p - Accident and Emergency

1p - General opthalmic services

The attitude of PCTs outside Birmingham, to patients without a Birmingham postcode, seems to be one of 'We're not going to spend money on them if we don't have to'

Professor Nick James, Queen Elizabeth Hospital

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