By Sharon Alcock
BBC radio health correspondent |
 Alison says she needs Herceptin now |
Alison Poole is campaigning to get NHS funding for herself and other women to be treated with the breast cancer drug Herceptin. Her efforts have taken her from her oncologist's office, to the Primary Care Trust, and on to the NHS Confederation, which represents Trust management across the country.
Now she visits the pharmaceutical firm which has developed the drug - Roche Pharmaceuticals.
BBC Radio Five Live took Alison to speak with Dr John Drake, Director of Medical Affairs at Roche.
For the 44-year-old nurse, who cares for elderly people in Stoke-On-Trent, the cost of Roche's new drug - which could halve the chances of her cancer coming back - is a key issue.
Unless her PCT - North Stoke Primary Care Trust - agrees to fund her treatment at an appeal meeting in the next few days and weeks, she will have to pay more than �40,000 to be treated privately.
Time is tight
She feels she hasn't the time to wait for Herceptin to get a licence and approval from the NHS drug watchdog NICE.
"My prognosis is very poor. They say judgments are being made on an individual's exceptional circumstances - but why don't my two daughters deserve to have a mother as much as any other?
"I would rather try Herceptin and risk the side effects because I believe I am at greater risk from developing terminal cancer."
Alison's first question to Dr Drake is why it's taking Roche so long to get the licence everyone is waiting for.
"These things do take a certain amount of time," he said.
"We have had more than 5,000 women on our trials, in 50 different countries, at something like 500 different hospitals.
"The data from each of them has to be analysed and then checked and the safety of the drug tested.
"Actually, if you look at how long it usually takes, we'll be right up there in record time."
Smart drug
Alison asks why Herceptin costs so much.
Dr Drake explains that 'smart' drugs like Herceptin, which use completely new technologies, cost huge amounts to develop.
 |  It is a fallacy to think that because these drugs are so expensive we are making a lot of money on it |
"The development costs can be anything from �300m-�500m, maybe more.
"You may have been working on two or three others at the same time which fell by the wayside.
"It is a fallacy to think that because these drugs are so expensive we are making a lot of money on it."
Over the last 48 hours Alison has told me about some of the women in her group who are desperate for this new drug which might let them live twice as long with breast cancer.
- Women who are 31, with babies under one, who started chemotherapy a few days after their baby's birth
- Women who have been told by loans companies that they are not deemed a sure enough investment to borrow money for their treatment
- And women like her, who will no longer have a pension fund or savings for their children's education, because they will have to pay for Herceptin privately to get it
And so I am not as startled as I might have been by her next question to this pharmaceutical giant.
Special plea
"Can I plead to Roche to fund ladies like myself to get Herceptin in this interim period? Perhaps you can make a charitable donation?
"Unfortunately we are too late for the trial, but too early for licensing.
 Nobody from the Department of Health would see Alison |
"We are not from the sort of social backgrounds where �40,000 is readily available.
"It is a terrible thing to have to go into debt, or to wait for the cancer to come back."
"At Roche we talk about this a lot," said Dr Drake.
"The dilemma, of course, is that we might not only be talking about Herceptin but lots of other drugs where you have this time element between the results coming in and getting a licence.
"It's something we can look into and discuss."
Good news
Shortly after the interview, Alison discovers that Devon and Cornwall - 11 PCTs in total - have announced they will fund Herceptin for suitable patients in their area.
More than a hundred women are expected to benefit before the licence comes through. I ask Alison whether it makes her angry,
"No, I am delighted for those women! This couldn't be better timing for our campaign too.
"Surely that will put massive pressure on other PCTs to follow suit? There might be hope for me yet."
Alison's final journey on the information trail takes her to Whitehall and the offices of Patricia Hewitt.
Five Live requested that the Health Secretary or another representative of the Department of Health meet with Alison, but the request was declined.
Alison wants to put on her campaign t-shirt and have a photo taken outside.
Hopeful for the future
"I'm hoping for some sort of shift in the situation. I think there's been great gains this week in that we know maybe a 100 ladies will be treated in Devon and Cornwall.
"We've just heard that West Yorkshire are going to fund it before licensing on humanitarian grounds.
"Why must the rest of the ladies in the UK be left. It is terrible that we are having to go to the PCT's, who are terribly overspent anyway, pleading for our lives.
"Patricia Hewitt, I want to say to you, you are the lady with the power and authority to sort this out.
"You have said you want to minimise the suffering of ladies with breast cancer, please do that.
"We're supposed to be the fourth richest country in the world - do we all have to resort to litigation to get any justice?"
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