'How can you put a price on life?'

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Thursday, January 01, 2009
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This is SouthWales

IT'S news none of us would ever want to hear. You've been diagnosed with cancer and told that, without treatment, you have just months to live.

But then there is a glimmer of hope on the horizon — a drug that will not cure the cancer but could prolong your life, giving you precious extra time with your loved ones.

The only problem is that it is too expensive for you to fund yourself, and health officials will not make it available to you for free, even though that is what is happening for patients in neighbouring towns.

If all that sounds too grim to think about, then imagine what Swansea grandfather Paul Popham is going through.

The 63-year-old has kidney cancer, and in October was given nine months to live. Since then, his family have been spearheading a campaign to make Sutent available to patients on the NHS after he was denied it.

Now Assembly Health Minister Edwina Hart has given Mr Popham fresh hope by ordering a clinical audit, or review, of the "postcode lottery" availability of Sutent to patients across Wales.

"The clinical audit is good news because we need hope, as long as it isn't false hope," said Mr Popham's daughter Joanne, who has been leading the family's campaign.

"The problem is that it could take months, and we haven't got months."

Unable to risk waiting for the outcome of the review, the Pophams are appealing against Swansea Local Health Board's decision not to fund Sutent, which costs around £30,000 year. That appeal will be heard on January 5.

"It is a race against time, but we are determined that his treatment will go ahead," said Joanne. "In our minds, that is what will happen.

"We cannot even think of the possibility that he might not be here when we know the drug is there and you can have it in places like Neath Port Talbot and Bridgend."

Announcing the clinical audit, Gower AM Mrs Hart said decisions made by health bodies, including NHS trusts and local health boards, would be closely scrutinised following the inconsistent prescribing of Sutent across Wales.

A study carried out by Mike Harmer, the medical director of NHS Wales, revealed that during 2008, there were 73 requests for Sutent.

But only 23 patients had their treatment agreed, while 48 had their treatment rejected — with six taking their cases to appeal.

All patients living in Neath Port Talbot and Bridgend who were recommended for the treatment by their consultants were provided with the drug.

But in Swansea, none of the 14 patients for whom Sutent was recommended was given it.

Mrs Hart said: "The past few months have seen concerns raised by members of the public over the availability of a number of drugs used to treat kidney cancer.

"In determining the effectiveness of such drugs and their potential benefit to patients, we are guided by Nice (National Institute for Clinical Excellence).

"Initial guidance for Sutent and Sorafenib, based on available information, was that there was insufficient patient benefit to warrant treatment, both on the grounds of effectiveness and cost.

"This guidance has been challenged and Nice is reconsidering its advice in light of further evidence."

While all this is going on, the clock is ticking for Mr Popham, of Ullswater Crescent in Morriston, who first started to suffer kidney failure problems in 1979.

In 2005 he was told he had a cancerous tumour on his kidney. In August, the former Alcoa fitter and turner was told it had spread and that chemotherapy could do nothing to stop it.

Then, in October, he was told he had nine months to live.

Earlier this year, Miss Popham presented a petition containing almost 8,000 names to AMs Dai Lloyd and Bethan Jenkins, calling on the Assembly to do all it could to allow Welsh patients access to the treatment.

She said the family would keep on fighting to get her father the treatment, whichever way that happened.

"We have heard of someone who, like my father, is on dialysis but has been taking Sutent for three years. So where this idea that the drug only prolongs life for a short time came from, I don't know," she said.

"Eight months against three years — how can you put a price on that?

"For Neath Port Talbot and Bridgend's policy to be so far removed from Swansea's is absolutely disgusting and so upsetting.

"No person should ever be in the position where they have cancer and are being forced to fight for life. It's just awful.

"When you are first told your father has kidney cancer and that treatment is available but he can't get it, you just cannot believe it.

"You cannot believe that, in this day and age, people have to fight to stay alive just because of money."

But, she emphasised, the family were not just fighting for Mr Popham.

"My father doesn't want this to be just for him. He's fighting for everybody," said Miss Popham.

"He's only 63, he's still young. He has four children and four grandchildren that he idolises, with another due in January.

"He's got everything to live for."

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2 Comments

  • Profile image for This is SouthWales

    by Caroline Jeffs, Aberavon

    Saturday, January 03 2009, 8:32PM

    “Yet again Joanne, Paul and all the family have to keep on gaining PR to fight this disguisting situation. No-one should ever have to fight to gain access to a drug that can give them precious time with their family. Keep strong, and positive -this decision has to be changed. Who can sleep at night in the swansea local health board knowing that they are currently denying this upstanding husband, dad, brother, grandad from a drug that can give extra time with his family. We all know the importance of family.....and every day is precious. Let me just state though that yet again this is a postcode lottery...if Paul lived just a few miles away he would be given this drug...that process is just truly cruel....where is the equal opportunities and access to all?? Keep positive, and good luck...best wishes. Caroline”

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    by Mrs Rosie Snow, Bridgend

    Friday, January 02 2009, 5:15PM

    “With regards to the gentleman Mr Popham and his family in Swansea who are fighting for the drug Sutent and who our heartfelt sympathy goes out to. I would like to say that when the people are mentioned who have won Sutent that they did not get it easily i fought very hard for the drug for my brother in Neath and it took 14 months of anguish for the whole family to get it. Dont give up Mr Popham keep on their backs and continue fighting and you will get it. N.I.C.E are in the wrong and they know it and will give in and God willing it will be in time in help you.”

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