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Last Updated: Tuesday, 18 October 2005, 09:35 GMT 10:35 UK
'My fight for breast cancer drug'
By Sharon Alcock
BBC radio health correspondent

Alison Poole
Alison believes she could benefit from Herceptin
Alison Poole leapt out of the radio a fortnight ago when she was interviewed on BBC Five Live's Drivetime Programme, as a woman with a compelling argument.

She is one of a group with breast cancer who have been campaigning to be prescribed the drug Herceptin on the NHS.

But her battle, replicated many times over across the UK, is caught in the eye of a red tape storm.

Alison, who is 44, found a lump under her arm last year.

I believe I am only halfway through my life and I want to be able to grow old disgracefully
Alison Poole

It was quickly diagnosed as breast cancer and removed in wide incision surgery which also, she explains cheerily, took away the sweat glands in her right armpit.

The cancer had already spread to Alison's lymph glands at the base of her neck.

Her oncologist put her on tamoxifen, another much-trumpeted drug, which works on the hormones causing the disease.

She has had chemotherapy and finished her 14th course of radiotherapy last week.

Looking healthy

Five Live decided to follow Alison's quest to get her questions about treatment with Herceptin answered.

When I meet her and one of her two daughters, 17-year-old Hayley, at the City General Hospital in Stoke-On-Trent, she looked to be glowing with good health.

"That's the thing with this disease," she explains, "you can have absolutely no idea you are ill when it happens - I was feeling really fit and well when I found the lump.

"And the chemo makes you brown, but I have skin burns from the toxins here on my neck - it's like you've been in the sun too long - and my veins are ruined!"

She believes in being 'upfront' about her condition, not least for the sake of her family and the countless other women who have contacted the group over recent weeks with their heartache.

Being 'upfront' means she is happy to show me the neat scar above her right breast to prove 'what a good job they did'. She refers to it as her crocodile bite.

New hairstyle

Alison's hair is cropped short - it's a style she's adopted by default after losing her hair.

"Well, I had quite a thick 'bob' before, but I quite like this style now - I never would have tried it before - I think it suits me!"

I am at a far higher risk of getting secondary breast cancer than any side-effects from Herceptin
Alison Poole

I ask her why she wants to take an unlicensed drug with side-effects - Herceptin is licensed for advanced breast cancer, but won't be licensed for the early stages until February at the earliest.

Then will have to be considered by the England and Wales authority NICE before it can be recommended for use on the NHS next spring or summer.

This is the red tape which so far prevents Alison from getting it free of charge.

"The reason why I am willing to take that chance is because I am at a far higher risk of getting secondary breast cancer than any side-effects from Herceptin and I want to live for my children.

"I believe I am only halfway through my life and I want to be able to grow old disgracefully!"

Specialist meeting

I go with Alison to see her oncologist Dr Murray Brunt who, ironically, referred several other women to the international Herceptin trials before Alison came along.

Alison Poole meets her consultant Dr Murray Brunt
Dr Brunt supports Alison's case

Alison was diagnosed too late to be on the trial.

"Alison's breast cancer is what 15-20% of women with the disease have" he explains.

"It is an aggressive Her2 type, which means she has too many copies of the gene Her2 and it overproduces protein, which causes the cancer."

Secondary cancers develop more quickly in Her2 positive women and Alison has been told by Dr Brunt hers is likely to come back.

"I would like to give you Herceptin, because that would halve the risk of it coming back now.

"Because it's not funded on the NHS (it would cost 23,000 for a year's treatment - more than 40,000 privately), I've put in a request asking for it for you.

"I've written to the Medical Director of the Trust who supports my request, and it's been passed to the Primary Care Trust."

Key development

The news that Alison's specialist is prepared to take clinical responsibility for giving her the drug is crucial.

Health Secretary Patricia Hewitt has pointed out that clinicians are able to take that decision to get Herceptin for their patients ahead of licensing.

What this really needs is a national initiative to pay for it
Dr Murray Brunt

But Dr Brunt feels that is a disingenuous observation, because he still has to go to the PCT pot to fund it.

He said: "It is frustrating, not so much locally from the PCT part, but as a country.

"There are, I think, about 30 countries now that have gone ahead to give this drug - they are all in the same situation - it hasn't yet got a license and yet they've looked at the data and they've said 'we will put specific money, hypothecated funds, into this'.

"That's really what I'd like us to do in the UK. The burden is being put on the PCT's who haven't been given a budget specifically for it, but what this really needs is a national initiative to pay for it."

Fingers crossed

Outside Dr Brunt's office I ask Alison if she's pleased to hear her case has been recommended for funding.

If I get cancer again, I am going to cost the NHS a heck of a lot of money anyway, so they should take the long-term view
Alison Poole

"Well, I won't hold my breath! Dr Brunt says he's written five letters for women so far, and is writing requests for another four.

"Some of them are in our group and have already had letters saying 'no'.

"I've had to go ahead and raid my savings and pension fund to get Herceptin privately for now - I'm hoping to start it next month, because it's clear I haven't got time to wait.

"But I just don't see why I should have to use that money to stay alive.

"If I get cancer again, I am going to cost the NHS a heck of a lot of money anyway, so they should take the long-term view."

We request a meeting with North Stoke Primary Care Trust.

The ultimate irony is that they employ Alison, who is an elderly care nurse.

Case considered

The Director of Corporate Affairs tells me: "We are shortly going to be considering Alison's case.

"A meeting with her now is not something we can consider. We find these meetings can be too upsetting for the patients."

Alison is not impressed: "We feel as though we're on a merry-go-round. Everybody is blaming everybody else.

"We want people to tell the truth for a change. We want them to tell us the facts as it is.

"If they could be courageous and just say it is a lack of funding then we'll know where to go to and ask the right questions."

Because North Stoke PCT felt unable to meet with Alison, we took her to London to speak with Gill Morgan, chief executive of the NHS Confederation, which represents NHS Trusts.

The chief executive Gill Morgan tells Alison she could not discuss her individual case.

But she said that if PCTs gave unlicensed drugs to patients, they would be left in a difficult legal position.

Postcode lottery

"Once it is licensed you'll be in a much stronger position. A good PCT will be forward planning now how much money they need to put aside to pay for these drugs once NICE has evaluated them.

"This is a tragedy and a terrible situation for you, and I understand what your frustrations and fears are, but we have this system to give assurances for patients."

It's not an argument Alison can stomach: "That argument is already lost, because we know that the NHS are funding it down south for some women.

"You can't have one rule for some and not for all the rest. I am prepared to sign a waiver, I have the backing of my oncologist, what more do they need?

"I feel like I've been resigned to the scrapheap, because I live in North Stafforshire."

On Wednesday: Alison speaks to the drug company which has developed Herceptin.




SEE ALSO
Cancer drug testing 'shortfall'
05 Oct 05 |  Health
Nurse wins breast cancer drug row
03 Oct 05 |  Somerset

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