TONY Wilson today urged health bosses in Greater Manchester to reconsider their policy over funding pioneering cancer drugs after it emerged that he is one of only 15 patients losing out in a "postcode lottery".
The music legend was denied a new drug for kidney cancer called Sutent on the NHS and is now paying privately for the £3,500-a-month treatment with the help of a fund set up by showbusiness friends.
Sutent has doubled the life expectancy of some patients in trials but is still being assessed for use across the NHS and health authorities can decide individually if they wish to fund the treatment.
In the last week, health bosses in Cumbria have decided to fund the treatment for patients, some of whom are being treated at Manchester's Christie Hospital.
But other Christie patients have been turned down for NHS funding for the drug because Greater Manchester has not adopted the same policy.
Using Freedom of Information laws, the MEN has discovered that just 15 Christie patients have been denied three cancer drugs, including Sutent, even though doctors at the hospital had supported their applications for the life-prolonging drugs.
Four of the patients - including Tony Wilson - are paying for their own treatment and the remaining eleven are going without the drugs.
Doctors at Christie believe their patients are being refused the drugs because they are too expensive but the cost of providing them to the 15 patients involved would be just £502,850.
This figure is a tiny fraction - 0.01 per cent - of Greater Manchester's £3.6bn NHS income last year and only slightly more than the £475,000 payout given to Chris Appleby, former chief executive of Pennine Acute Hospitals Trust when he resigned in April last year.
Good procedures
Health bosses say they have to make very difficult decisions in order to provide the best care for patients and have good procedures in place to look at the effectiveness of new drugs.
Mr Wilson - known as Mr Manchester - said two patients being treated alongside him at Christie are receiving funding for the therapy because they live a few miles away in Cheshire, which funds the drug for some people.
He said: "I want to know what has happened to the 11 people who can't afford to pay for treatment.
"I want to know what their lives are like now, have they been sentenced to death by this decision?
"I'm lucky I have this fund and my friends have been very generous, but some people needing these drugs are cashing in life savings, some are selling their homes.
"You can get tummy tucks and cosmetic surgery on the NHS but not the drugs I need to stay alive. It is a scandal."
Manchester NHS Primary Care Trust, which has refused to pay for the treatment for Mr Wilson, says there is not enough `demonstrable evidence to support the use of this drug in treating kidney cancer.'
However Prof Robert Hawkins, a kidney cancer expert from the Christie believes the total bill for Sutent if it was routinely available on the NHS would be £2m a year for Greater Manchester, he said: "I believe it is because the drug costs £500 that there is an issue over prescribing it, there is no doubt it would be available if it was cheap.
"I will now be able to prescribed Sutent to patients from Cumbria but not routinely to anyone else which puts me as a doctor in a very difficult position."
The North East and Cumbria Cancer Drug Approvals Group have decided to fund Sutent until a decision is made on its future by the National Institute of Clinical Excellence. They said: "As more evidence became available we have decided that the drug can lead to improvements in the quality of life for patients when used as an initial treatment.
"We have also been successful in our discussions with the manufacturers of the drug and have secured a reduction in the cost.
"The drug will be used as an initial treatment only, it is not to be used as a second line palliative treatment when the initial treatment has failed."
Greater Manchester's 10 PCTs take advice from clinicians at the Christie, the specialist commissioning team, public health representatives and pharmacists on the effectiveness of new cancer drugs before deciding whether to fund them.
Individual PCTs also have their own panels made up of clinicians, managers and non-executive directors which consider individual cases, after taking evidence of exceptional circumstances on an individual basis.
Effort
Shauna Dixon, clinical director for Oldham PCT, which is leading Greater Manchester cancer dug commissioning, said: "Every effort is made to make sure the best care is provided to patients.
"All NHS trusts give careful consideration to the very difficult decisions they make when they look at individual cases to make sure they safely meet their medical needs. A very clear framework is used in order to ensure there is good evidence to demonstrate a drug is effective."
Patients paying for drugs have to become private patients, which means all associated treatments have to be paid for as well.
Department of Health guidance does not allow a hospital to provide a patient with both private and NHS treatment at the same time, known as co-payment. They believe co-payment goes against the principles and values of the NHS and could lead to a `two-tier system'.
This can mean patients' bills double when the cost of scans, tests and nursing care is included in the bill.
Christie Hospital said: "As more cancer drugs become licensed for use, an increasing number of patients may opt to pay for these drugs ahead of NICE guidance if their primary care trust will not fund it.
"If a NHS patient cannot receive funding for a drug, and chooses to pay for this drug privately, they need to become a private patient. This means that all their associated treatment and care, such as scans and blood tests, will need to be paid for privately.
"We always aim to provide each of our patients the best possible treatment and care. Treatment options and any funding issues are always fully discussed with a patient before any decision is made.
"There needs to be `exceptional circumstances' for our doctors to apply for funding from a primary care trust (PCT) for a licensed drug that has not yet been approved by NICE."
What do you think? Have your say below.
Read more about Mr Wilson's battle via the links on the right of this page.
Tweet
Showing comments 1 to 24 and replies | View All
pro bono publico, Manchester (02/08/2007 at 07:12)
Pravda (02/08/2007 at 09:22)
ian, Oldham (02/08/2007 at 12:04)
Clevers, Manchester (02/08/2007 at 12:07)
Having worked in large organisations I have no doubt that savings could be made in non-essential areas or by more effective working.
With regard to the "two tier" comment what could be more "two tier" than getting the treatment if you can pay and not getting it if you can't.
Pandora (02/08/2007 at 12:20)
ace, manchester (02/08/2007 at 12:57)
Calamity (02/08/2007 at 13:23)
All the best Tony.
Ms D, Manchester (02/08/2007 at 13:54)
Ace, you should join the forum of a certain website - it was on Panorama this week. You can voice any opinion, however outrageous some might think but it will never be edited and there are many more that share your opinions. I think you would find it fascinating.
Black Sabbath (02/08/2007 at 13:58)
AH, Manchester (02/08/2007 at 14:05)
Ms D, Manchester (02/08/2007 at 15:03)
traffordtroublemaker (02/08/2007 at 16:36)
There should be a system where your usage of the NHS should be logged, and at the end of the year it should be tallied up against your NI payments. If you have cost the NHS more than you have paid them in NI, you should then be billed the difference. Unused NI should then roll over to the next year. That way, if you pay your NI, you should get the treatment you need. Any prescription charges should be added to your NI contributions. This way, anyone over 16 without an NI number can be billed at point of use, like they do in other countries. Then we would all get fair dibs on the health service. The NI contributions of married couples could be combined and used jointly, so that if a woman needed to take time out to bring up kids could still use the service on her husbands credits.
I'm just getting fed up of the lack of care we are getting from the NHS. I'm only 26 and am a regular visitor to my GP due to long term health issues, and dread to think what it's going to be like when I get older. I already find it hard to get appointments, even though I have paid NI for the past 4 years and feel I have a right to get an appointment when I need it.
RANDYRED (02/08/2007 at 16:49)
I saw you years back walking onlong lymm dam and your car then was a aston martin.
Im all for saying hey it dont matter about how much money the guys got.
What makes me angry is im an ex gunner in the royal navy and do you know a misle a sea dart is 500,000 eack and they use them as target practise.
They are building 4 nuclear subs as well as air craft carriers and why do we need these(NO REASON)
The government spend our the tax payers money on crap.
enb, somewhere interesting (02/08/2007 at 16:52)
ace, manchester (02/08/2007 at 17:42)
Your right britain still playing at trying to be a world power and people laughing at us? we are a small island off the coast of europe,we have very little power in the 21st century.its time to spend this money on other things rather than a military budget.people first.
alison, chorley (02/08/2007 at 19:09)
I am campaigning for my 44 year old husband to have a drug called Cetuximab for bowel cancer funded by Central Lancashire PCT. My husband has been turned down 3 times by our PCT. It is a nightmare. Imagine having a terminally illness and knowing that there are drugs available to prolong your life, but the NHS who you have paid into all your life will not fund the drug.
In almost all other European countries and America, these newer drugs are widely available. You dont realise what this does to peoples lives until you have a personal experience of this terrible "postcode lottery".
I wish Tony all the best and hope that the treatment he is paying for works. He should not be paying for this drug!!!!!
We are paying for my husband to have the drug privately, but very soon our money will run out and then my husbands life will run out because of the NICE
Ms D, Manchester (03/08/2007 at 11:50)
OH YEAH ? try telling that to Tony Wilson and others like him. What codswallop!!!!
ace, manchester (03/08/2007 at 12:36)
Im in full agreement of what youve just said they were prepared to spend multiple thousands on sharkskin grafts on the terrorist but refuse our own people help.its time we took control back in britain .we are being controlled from europe.
Z.A.Manchester, Droylsden (03/08/2007 at 14:17)
Ms D, Manchester (03/08/2007 at 17:56)
I really feel for the people on here who have had similar experiences to Tony Wilson with their relatives and the same could happen to any one of us. It sickens me that the terrorist received the quality of care afforded to him but others simply have no value at all in the NHS. It's time for a change and we should all complain to our MP's about it - the problem is nobody seems to be bothered about doing anything anymore.
ex-mancunian, Derbyshire (04/08/2007 at 17:26)
We know about the thousands of immigrants who can use the NHS, even when they have not yet contributed tax or National Insurance, but how many know about other anomalies in our society? There are British billionaires and multi-millionaires who pay little or no tax. If they paid their fair share, the treasury could collect up to £150 billion more per year. Last Christmas, tax-free bonuses totalling £4 billion pounds were paid to four thousand City of London workers, and City asset-strippers have a special deal to pay only 10 percent tax on their millions of pounds profits.
And, instead of wasting 6 billion pounds on ID Cards, the Government could put the money into the NHS. Let’s get some sanity back into Government.
Kitty@Nelson (05/08/2007 at 20:27)
Kitty@Nelson (05/08/2007 at 20:33)
Go here to read about REAL people having the same difficulties...
http://www.KidneyCancerResource.com (05/08/2007 at 22:29)
That politicians overide clinical need to fund the self inflicted rectal repair of perverts, Millions a year spent on tattoo removal, bum and breast lifts and other life style choices at the expense of drugs that Tony Wilson and others need to live is an obscenity.
Patients like myself and Andy Thomas have tried to help ourselves and others whilst the NHS is steadily destroyed by devolved irresponsibility and rafts of parasites in politics, QUANGOs and management.
We have set up something of a self help and awareness service at www.KidneyCancerResource.com where we hope to be able to empower and inform those involved with The Challenges of Urological Cancers.
If British Politicians are willing to give OUR money to fund Africa and its many criminal leaders, fund subways in Warsaw, pay off Greek debts from the last Olympics and fund the 150,000 useless politicians and Snivil servants in Brussells just how do the justify EUthenasing Tony Wilson and others like him unless they fund their own essential drugs.
If you need help or wish to help others similarly Challenged to Tony Wilson, who has been fortunate enough to have friends who will pay to keep him alive - Good luck Tony and warm hands from all who hold a hand out to help you.
Join us in helping others at:
www.KidneyCancerResource.com
Good luck & thanks for Raising Awareness.
Regards,
Greg L-W.
www.UrologyCancerResource.com