Family's plea to end drug 'lottery'

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Tuesday, December 30, 2008
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This is SouthWales

THE family of a Swansea cancer sufferer face a desperate race against time to get him a life-prolonging drug before it's too late.

Paul Popham, of Morriston, was given nine months to live in October.

After a campaign led by his daughter Joanne, Welsh Health Minister Edwina Hart has now ordered a clinical audit of the "postcode lottery" availability of Sutent, which can prolong life.

It has been prescribed in neighbouring Neath Port Talbot and Bridgend, but has not been given to any patient in Swansea this year.

Joanne's fear is that, even if the audit led to the drug becoming more widely available, it might be too late for her 63-year-old dad.

"At the moment, he is feeling fine in himself," she said.

"But he is worried, just like the rest of us, that as time goes on without treatment, the cancer is progressing.

"The clinical audit is good news because we need hope, as long as it isn't false hope.

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

"It is a race against time, but we are determined that his treatment will go ahead. 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 by NHS Wales medical director Professor Mike Harmer revealed during 2008 there were 73 requests for Sutent in Wales. 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 recommended for the treatment by their consultants were given the drug.

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

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 can to allow Welsh patients access to the treatment.

Her father, from Ullswater Crescent in Morriston, first started to suffer kidney failure 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.

His appeal against Swansea LHB's decision not to prescribe him Sutent, which costs around £30,000 a year, will be heard on January 5.

"We are going to keep on fighting until he gets the treatment, whichever way it happens," said Miss Popham.

"We have heard of someone who, like him, 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.

"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 is a great man. He 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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7 Comments

  • Profile image for This is SouthWales

    by R. Mitchell, Dubai, UAE

    Wednesday, December 31 2008, 6:37AM

    “It is time to realise that the NHS has had it's day and we have seen the best of it. It is now time for people in the UK to accept that they must now pay for their treatment like most the rest of the world. We moved out of the UK several years ago and we now have to pay for insurance to cover our medical needs and also pay for our consultations at the doctors surgery.

    The NHS cannot provide for all and should focus its resources on providing for the elderly and the young. Let's face it, we have all witnessed the doctor's surgeries which are full of time wasters every Monday morning and now prescriptions are being handed out free. This just invites abuse of the system.

    Impose a charge of £5 per doctor's visit and a similar charge for prescriptions. That will clear out the timewasters and increase the revenue for those that genuinely need it. Those that abuse the system will then have to decide whether to visit the docs or buy another packet of fags.

    If insurance companies are covering the cost of the drugs, this will also end the "lottery". They will be available for all.

    This is the 21st Century guys. Nothing is for free!!!”

  • Profile image for This is SouthWales

    by anon, swansea

    Tuesday, December 30 2008, 10:36PM

    “what a disgrace. how can you put a price on someones life, it's unfair, theres now free prescriptions, free hospital parking and these people who need this life saving treatment are being told no because it's to expensive im sure they could get the money from somewhere.”

  • Profile image for This is SouthWales

    by J, Swansea

    Tuesday, December 30 2008, 3:27PM

    “What I dont understand is that we have been given free prescriptions in Wales when in fact those that were required to pay for them could probably afford to anyway. Then they removed the parking charges at hospitals. The removal of both of these charges has resulted in a massive loss of revenue to the NHS in Wales - literally millions per year. This loss of revenue has an impact on how much is available to spend which must have a knock on effect on what drugs are available. As a result we are getting the cheapest available drugs not the best available. Yet I seem to recall people were delighted not to have to pay for prescriptions and parking. Personally I would be happy to pay for prescriptions and parking if it helped sick people get the best treatment. It is extremely frustrating hearing about new treatments that drug companies are coming up with when we can afford to use them anyway.”

  • Profile image for This is SouthWales

    by Angela Pridmore, Swansea

    Tuesday, December 30 2008, 11:30AM

    “A finer man you could not wish to meet. Good Luck Wally and Joanne and all the family with the fight and thank you from everyone who may need to use Sutent in the future. Wally a legend in the Swansea Senior League - come on you Saints!!!!!!!!!”

  • Profile image for This is SouthWales

    by carol fortune, Swansea

    Tuesday, December 30 2008, 10:57AM

    “I wish everyone who needs this Sutent all the best.
    We needed it for my sister-in-law , but were refused funding. by the LHB..She dies at the age of 57 in September...didnt have any kidney cancer treatment at all.was told sutent was the only way forward for her.
    Edwina Hart i see has had a change of heart too...sHer reply to me was she agreed with the NICE report in August”

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