Health trusts may face bill for top-up refunds after labour's U turn on cancer drugs

Primary care trusts could come under pressure to refund tens of thousands of pounds to patients who have paid for top-up treatment.

One PCT has already refunded more than £23,000 to two patients who paid for care that was later deemed to be the responsibility of the NHS.

Another faces a demand for nearly £60,000 from a patient who initially funded his own treatment with Cetuximab before being accepted by the NHS as an exceptional case. The patient's lawyer told HSJ that if the PCT did not pay up, their fight would go to court, where they hoped to set case law.

PCT network director David Stout warned that in the absence of clear guidance on how to handle retrospective claims, PCTs were likely to come under pressure to follow precedents set by others.

Worcestershire PCT agreed to "compensate" two patients for the cost of NHS care they were forced to pay for while receiving Avastin for bowel cancer. Barbara Moss was awarded £13,658 of her £21,000 treatment bill and Clifford Shore got £10,000 of his £16,000 costs.

A PCT spokeswoman said the PCT had taken legal advice. "We don't believe this will set a precedent across the country; it will be up to individual PCTs to look at cases individually, as we did," she said.

Patient Michael Porter is challenging East and North Hertfordshire PCT to refund £55,900 that he used to pay for Cetuximab. His claim rests on the fact he responded well to the drug and was subsequently accepted as an exceptional case by the PCT.

Swaffields Solicitors principal Simon Swaffield, representing Mr Porter, said: "It's not satisfactory from a health service point of view to just muddle along and if you make enough noise, you might get some money.

"The reality is we've taken Michael's case forward on this footing, very much with a mind to establish liability."

Mr Stout said PCTs were expected to make judgements on whether to reimburse or not "without any real framework within which to work".

"If some PCTs start [reimbursing], I'm sure that ratchets up the pressure on other PCTs to do the same," he said.

He also said that where a patient had secured exceptional case funding on the basis they had proved a drug's efficacy by self-funding initial courses of treatment, this breached the principles of the Richards review of co-payments because it created inequity.

From:
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Dying patient forced to pay £20,000 for NHS care

The grieving family of a woman who died last week tells why health service rules on top-up co payments for cancer drugs must be changed.

A mother of three has died from cancer after her family was forced to pay £20,000 for treatment she was denied by the National Health Service because she had bought a drug privately.

Carole Simmons, 59, died last Tuesday, the third person known to have died after suffering from the labour government’s policy of withdrawing NHS care from patients who buy top-up drugs.

Her death comes in the middle of a government review of top-up treatment, which was ordered after a campaign by The Sunday Times exposed the scandal. The review panel is due to report to Alan Johnson, the health secretary, later this month.

This weekend relatives of Simmons, who lived in Yapton, West Sussex, spoke out in the hope of sparing other families from suffering the same tribulations. Simmons’s husband Kevin, 59, a former divisional officer in the fire service, described what happened when she was diagnosed with bowel cancer last December.

“They more or less said that Carole had no hope, that she only had weeks to live,” he said. “They were sending Carole home to die.”

In an attempt to give Simmons more time, her family paid privately for a drug called Avastin, which was not available on the NHS. They believe it prolonged her life.

However, under labour government rules their NHS treatment was then withdrawn. As well as the cost of Avastin, the family had to pay about £20,000 for routine drugs, scans and consultant appointments that would otherwise have been available on the NHS.

“We got nine precious extra months with Carole which we may not have had if we didn’t have the money,” said Simmons. “We want Carole’s legacy to be that this policy will be changed so that this doesn’t happen to anyone else and top-ups are allowed.”

During the extra time she was given, Simmons, a former teaching assistant, saw a grandchild start school, enjoyed a family holiday in France and attended her sister’s 40th wedding anniversary in Jersey.

Simmons’s youngest son, Chris, 28, a solicitor, said: “Some people may be able to raise the money for the extra cost of the drug but they may not be able to pay for all the treatment, such as scans and consultant fees. Instead of ordering a review, Gordon Brown should have ended this immediately and allowed people to pay just for the extra cost of the drugs.”

He added that paying for Avastin had given “us time to put our affairs in order and to say our goodbyes”.

Simmons’s daughter Kate, 30, a civil servant, points out that her mother had paid for her NHS care. “Our mum worked all her life, apart from when she was bringing us up. She never claimed unemployment benefit and always paid her national insurance and taxes,” she said.

“Our mum really wanted us to speak out so that this would not happen to another family.”

The Simmonses paid for the drug and basic NHS care from savings and a loan. “This was my parents’ pension savings. They didn’t have the money lying around,” said the eldest son Colin, 35, a local government manager.

Simmons was treated at St Richard’s hospital in Chichester before her NHS care was withdrawn. She then paid for Avastin and her treatment, including scans using NHS equipment, at the Spire Portsmouth hospital in Havant.

The Royal West Sussex NHS Trust, which runs St Richard’s hospital, said it was following government guidance by refusing to allow Simmons to continue to receive NHS care while paying for the Avastin.

The government inquiry, which is being carried out by Professor Mike Richards, the government’s cancer czar, was ordered in June following the disclosure in The Sunday Times that another bowel cancer patient, Linda O’Boyle, 64, from Billericay, Essex, had died after her NHS care had been withdrawn because she paid privately for the drug Erbitux.

In May last year Sandra Baker, 62, from Walgrave, Berkshire, died of bowel cancer after being denied NHS treatment because she paid for a drug.

Simmons is the first patient known to have died during the government inquiry after being denied NHS treatment. She would have celebrated her 40th wedding anniversary today.

Her local MP, Nick Herbert, the shadow justice secretary, said: “I am horrified that my constituents have had to use their savings in this way. The awful situation at the moment is that if you do manage to scrape together the money to buy these drugs yourself, your NHS treatment is withdrawn. This puts patients in a terrible dilemma.”

Most leading health organisations, including the British Medical Association, the Royal College of Nursing (RCN), the NHS Confederation, which represents hospital managers, and the King’s Fund and Reform think tanks, have said top-ups must be allowed.

The Roy Castle Lung Cancer Foundation and the Patients Association have both backed top-ups in their submissions to the inquiry.

While the RCN accepts that allowing top-ups is necessary, nurses’ leaders warn that the change could create “business class” treatment for NHS patients who can afford it and thus potentially undermine the founding principles of the NHS.

Others argue that there is already a two-tier health service, as those who can afford to pay for all their care go to private wings of NHS hospitals.

The government inquiry, to be published at the end of this month, is expected to propose that patients should be allowed to pay for additional drugs without losing their NHS care.

Kate Spall of the Pamela Northcott Fund, which campaigns on behalf of patients denied drugs on the NHS, said: “Let us hope that Carole’s tragic story will bring about the end of this situation for patients.”

From:
http://www.timesonline.co.uk/tol/news/uk/article4882645.ece

NHS's refusal to fund cancer treatment costs mother £21,000

For Barbara Moss, the photographs of this summer's camping trip to France will be particularly special.Two years ago, she was diagnosed with bowel cancer and given less than five months to live. After chemotherapy failed to slow the disease's progress, doctors said that her only hope was a drug called bevacizumab, marketed as Avastin, which her local NHS refused to fund.

When Mrs Moss, 53, cashed in her pension to buy the drug, she was also made to pay for other NHS care that previously had been free. Her story highlights a national debate on drug rationing that is about to reach fever pitch.

Next month, Prof Mike Richards, the Department of Health cancer tsar, will announce results of a labour government review into rules that deny NHS treatment to patients who want to "top up" their care by paying for some of it. The Government had to examine the issue after a public outcry over the death in March of Linda O'Boyle, a grandmother denied free NHS treatment after buying the bowel cancer drug cetuximab, marketed as Erbitux.

Mrs Moss was prescribed Avastin by her consultant at Worcester Royal Hospital, but the primary care trust refused to fund it. Instead, the former schoolteacher and her husband, Mark, a toolmaker, cashed in their pensions, and were given money by Mrs Moss's 86-year-old mother to pay for the drug.

It shrank a secondary tumour in her liver so successfully that she was able to have it removed. When the cancer returned, she was once again denied Avastin. The couple spent a total of £21,000 on the drug and on the chemotherapy and nursing that Mrs Moss had previously received free of charge.

Latest scans show she is tumour-free. The cancer is likely to return, but already she has survived for 17 months beyond her original prognosis. On holiday in France, Mrs Moss said: "All this extra time has been so precious. I have been able to spend time with my husband and two sons, and it has helped them and me to prepare for my death. Every day now is a bonus, and I am grateful for that. But I am angry that after paying our taxes we had to take on these battles, and I feel really aggrieved for those people who cannot afford these treatments which are available in so many other countries."

Mrs O'Boyle's widower, Brian, recently had a private meeting with Prof Richards to discuss the top-up review. Last night Mr O'Boyle told The Sunday Telegraph that he wants the entire system of drug rationing overhauled, so that every patient gets the treatment their consultant prescribes.

The father of three said his wife, who was an NHS occupational therapist, would have been amazed by the impact her death has had. Worcestershire PCT said it had concluded that there was not enough evidence to support the use of Avastin for bowel cancer.

Southend Hospital Foundation trust, which treated Mrs O'Boyle, said the charges for her NHS care followed Government policy, which meant only one organisation could be held accountable for a patient's care.

The charity Bowel Cancer UK campaigns on behalf of patients seeking both Avastin and Erbitux. The drugs' use is restricted by the National Institute of health and Clinical Excellence (Nice), the rationing body, on the grounds of cost.

The charity and many bowel cancer doctors are critical of the Nice guidance, but also say PCTs do not have proper policies that should allow some patients to be given the drugs if their cases could be defined as exceptional.

Ian Beaumont, charity's campaigns director, said: "We think the current system is totally broken. All over Britain we have got patients who are having to battle the NHS system at the same time they are fighting cancer."

From:
NHSs-refusal-to-fund-cancer-treatment-costs-mother-21000.html

Health Direct thinks that it is quite absurd that a quango like labour's NICE should have the power of life and death over patients when such powers were abolished years ago for the judiciary.

The problem for the NHS is that labour has blurred the difference between for example top ups for dental treatment and those for life saving cancer drugs- with no idea of the size of potential extra income for the NHS if labour was to see sense and allow extra personal funding.

Top doctors slam NHS drug rationing

Britain's top cancer consultants have accused the labour government’s drugs rationing body of ignoring the plight of patients forced to sell their cars and remortgage their houses to pay for cancer treatments freely available in Europe.

Twenty-six professors blame the severe restrictions imposed by the National Institute of Health and Clinical Excellence (Nice) on its failure to “get its sums right”.

Nice refuses, on grounds of cost, to recommend some drugs for patients with advanced kidney cancer. The consultants, who include the directors of oncology at Britain’s two biggest cancer hospitals, the Royal Marsden in London and Christie hospital in Manchester, claim there is enough money in the NHS to pay for the drugs.

Their letter to The Sunday Times states: “We now spend similar amounts to Europe on health generally and cancer care in particular, but less than two thirds of the European average on cancer drugs. It just can’t be that everybody else around the world is wrong about access to innovative cancer care and the NHS right in rationing it so severely.” They say: “The time has come for a radical change in how the NHS makes rationing decisions for cancer.”

This weekend Andrew Dillon, the chief executive of Nice, and Sir Michael Rawlins, the chairman, challenged the cancer experts to explain which acutely ill patients should be sacrificed to free resources for cancer sufferers.

They said: “There is a finite pot of money for the NHS, which is determined annually by parliament. If one group of patients is provided with cost-ineffective care, other groups – lacking powerful lobbyists – will be denied cost-effective care for miserable conditions like schizophrenia, Crohn’s disease or cystic fibrosis.”

This week patients from the Kidney Cancer Support Network will demonstrate outside the Nice offices in London against the refusal to fund the kidney cancer drugs Avastin, Sutent, Nexavar and Torisel.

Health Direct asks if National Insurance was brought in so that we could pay for our medicine . was NICE was brought in so there would be some money left in the kitty for "drinks at Christmas "?

NHS risks losing cancer drugs after NICE blights patients

One of the world’s leading drug companies is threatening to withdraw some of its new cancer treatments from the process by which they are approved for use in the National Health Service.

Cancer patients in Britain will consequently be denied more effective drugs that are available to sufferers in other countries.

Roche, the Swiss pharmaceutical giant, has already refused to supply economic data on its drug Avastin for treatment of lung and breast cancer to the National Institute for Health and Clinical Excellence (Nice), the authority that evaluates the cost-effectiveness of medicines for the NHS. This means Avastin will not be available on the NHS for those diseases.

Avastin is said to double the time a breast cancer patient’s condition remains stable when compared with existing treatments. Studies have also shown improved survival rates for lung cancer victims.

Roche said last week it will consider withdrawing from other evaluations rather than submit products only for them to be rejected by Nice as too expensive.

The statement is the latest twist in the growing row over decisions by Nice. Earlier this month Nice caused an outcry in a preliminary decision when it rejected the use of Avastin (also known as bevacizumab), Sutent (sunitinib), Nexavar (sorafenib) and Torisel (temsirolimus) as too expensive to treat kidney cancer.

“The alternative to these drugs for many patients is death,” said Jonathan Waxman, professor of oncology at Imperial College, London. “Nice is making terrible mistakes.”

The survival rates for cancer in Britain are already among the lowest in Europe — on a par with Poland, Slovenia and the Czech Republic, according to data published last year.

However, cancer charities acknowledge there has been significant improvement in rates since the government made the issue a priority with its NHS Cancer Plan, first launched in 2000.

Some consultants argue, however, that Britain already spends less on cancer drugs than many other European countries and that it is “crazy” to reject drugs proven to prolong life.

Richard Barker, director- general of the Association of the British Pharmaceutical Industry, which represents the drug companies, said: “Nice does a tough and necessary job, but is making errors because of a very mechanistic approach.

It relies too much on arithmetic and not enough on clinical judgment.”

Nice was created in 1999 with the aim of ensuring that decisions on the best and most cost-effective drugs for the NHS were made at a national level, were transparent and could be challenged.

When the drug companies scrutinised the economic modelling used by Nice, they realised that the estimated costs of their drugs and effectiveness could vary widely.

Even more seriously, some of the calculations were wrong. There was an outcry in the medical community in February 2006 when Nice stated that Temodal (temozolomide) — declared as the biggest breakthrough in treating brain tumours for decades — did not offer value for money.

Temodal had won approval from the European regulator in 2004, but many British patients were denied treatment as Nice wrangled over costs.

Peter Davison, 48, a manager for Cambridge University Press, was among the few British patients who received the drug — because he was diagnosed with a brain tumour while working in Singapore.

“I was lucky to be abroad,” said Davison, who is now in remission. “Four months after I had the operation to remove the tumour, I was running and climbing mountains.”

When Schering-Plough — the pharmaceutical company which markets Temodal — prepared its appeal against the Nice decision, it identified an error in the modelling. Once corrected, the model showed the drug was cost-effective — and as a result it was ultimately approved for NHS use.

Not surprisingly, the drugs companies now want full access to the economic models, with the chance to check the accuracy of the calculations. In May, the High Court ruled that Pfizer and Esai, the companies which market the Alzheimer drug Aricept, should be given full access to these models.

“We believe this modelling might not be fit for purpose and we want to check it,” said a Pfizer spokesman last week. Nice said it was seeking leave to appeal to the House of Lords after the High Court decision.

Even where the models are correct, consultants and patients’ groups say Nice fails to give proper weight to the evidence from clinicians and patients’ groups.

The Sunday Times has highlighted the fact that NHS patients do not even have the option of paying for the drugs privately because of government ban on “co-payments”. The labour government has said it will review the issue.

Professor Sir Michael Rawlins, chairman of Nice, said the evaluation process was recognised internationally and Nice had been commended by the World Health Organisation for the quality of its work. He said: “We have a finite amount of money to spend on healthcare and we have to divide it up in as fair and as equitable a way as we can. We can’t say to yes to everything. It’s awkward, it’s difficult, it’s unpleasant.”

From:
http://www.timesonline.co.uk/tol/news/uk/health/article4538256.ece

NHS drugs body NICE 'bullied, ignored and patronised' patients

The NHS's drug-rationing body NICE has been accused of bullying, ignoring and patronising patients in consultation over the availability of life-altering medication.

The attack comes after the National Institute for Curbing Expenditure (NICE) ruled that drugs capable of prolonging the lives of kidney cancer patients by up to two years were too expensive to be made available on the NHS.

It coincides with the publication of a report which found that more than 1,000 patients have been turned down for cancer drugs in the past two years because of a postcode lottery.

Immediately after the decision on kidney drugs last week, campaigners denounced it as akin to a "death sentence" for thousands of people.

Now experts and patients' representatives invited to participate in the consultation process have claimed it was "flawed and irrational".

Charity Kidney UK is expected to make an official complaint that its advice was ignored, while three out of the four patient representatives asked to attend have registered protests.

One patient representative, Bill Savage, a retired management consultant who had a kidney removed, claimed that he and other patients were made to sit through a 101-page Powerpoint presentation focusing solely on the costing of the drugs.

"We were patronised and bullied by a process that marginalised us," Mr Savage, 61, said.

Kate Spall, who won treatment for 80 patients this year by challenging the priorities of local primary care trusts, drew up advice for Nice with the help of a large number of cancer sufferers, but was so appalled by the process that she declined to be named as a consultee and made a written complaint.

"We waited for our opportunity to contribute - and it never came," she said.

The four prohibited medicines include Sutent, which can prolong life in kidney cancer patients by up to two years. The draft guidance also rejected Avastin, Nexavar and Torisel.

Nice has said it has sent responses to all complaints but would not comment further.

From:
NHS-drugs-body-Nice-bullied-ignored-and-patronised-patients-say-charities.html

Tensions grow over cancer treatments as NICE blocks drugs

The new generation of cancer medicines raises delicate and potentially explosive issues for the labour government’s medicines advisory body National Institute for Curbing Expenditure (NICE).

In the past decade, the NICE has recommended an overwhelming majority of the 251 drugs it has reviewed. More recently, however, Nice has rejected half a dozen cancer therapies and forced the manufacturers of others to develop more imaginative, and cheaper, alternatives.

Already the agency has encountered difficulty obtaining some of the information it needs to make its assessments. Now, two manufacturers – Roche and Merck Serono – have raised the stakes.

They are explicitly refusing to co-operate with requests for cost-effectiveness data on their medicines Avastin, for lung and breast cancer, and Erbitux, for late-stage colorectal cancer, respectively.

“Roche did not consider it a good use of either public sector or indeed Roche’s own resources to produce a full submission ... for a year-long appraisal which would have resulted anyway in negative guidance,” Roche said.

Professor Michael Rawlins, chairman of Nice, has a different explanation: “They’re saying that they felt they could not substantiate the high prices they expected to command in relation to the benefits of the product.”

Nice’s role is to assess both clinical and cost-effectiveness, based on the principle that it is unjust to expect the National Health Service to buy expensive medicines that offer little benefit.

The agency does not scrutinise all medicines, nor does it or the NHS refuse treatments simply because they are expensive – developing effective but costly treatments for rare conditions has fostered an entire sub-sector of companies.

But cancer affects a vast and growing patient pool. While a few new medicines, some linked to diagnostic “markers” such as Herceptin for breast cancer, are providing breakthrough treatments, many others have so far shown far less impressive results, extending life by a few months at best in some patients. Yet prices remain high.

The Association of the British Pharmaceutical Industry, the trade body, stresses the costs of developing cancer medicines and the fact that many fail and never come to market.

The body says medicine prices overall in the UK are below those of a number of other European countries and represent a small and declining proportion of total health spending – below 10 per cent of the NHS budget.

There is debate over the need for Nice both to accelerate its review of new drugs and to review its criteria, as well as for similar levels of scrutiny to apply to other parts of the NHS.

Denise Richard, head of the UK oncology business unit for Merck Serono of Germany, which has failed to win Nice approval for Erbitux for late-stage colo-rectal cancer at £2,700 ($5,330) a month, argues that Nice needs to review its criteria, speed up its reviews and change its procedures.

She says that few cancer specialists are involved in Nice technical reviews because of possible conflicts of interest; that companies cannot update Nice during long appeals, despite fast-changing data on drug efficacy; and that the thresholds for cost-effectiveness should be raised for patients with late-stage cancer, since they rarely lived more than a few extra months.

Pharmaceutical companies are reluctant to cut prices. While the UK represents only 3-4 per cent of the global market for medicines, it punches above its weight, in part because Nice’s assessments are closely followed internationally. Price reductions in the UK would likely trigger copycat actions by purchasers elsewhere and encourage “parallel trade”, by which medicines sold in countries at lower prices are exported by arbitrageurs to higher priced ones.

The result has been a series of hidden discounts, such as on Velcade for multiple myeloma – the nominal list price stays the same, but the company will reimburse the cost to those patients in whom it proves ineffective.

Ultimately, the best hope for better value might be that, as drugs are used for earlier stage treatment in many more patients for a wider range of cancers, falling prices will be compensated by rising volumes. But for now, the industry remains cautious.

From:
http://www.ft.com/cms/s/0/fc9fa62a-42e4-11dd-81d0-0000779fd2ac.html

Banned cancer drugs better than NHS ones

Privately bought cancer drugs are proving to be up to five times as effective as NHS treatments, Health Direct reports on the suffering the co-payments ban is inflicting on patients.

The National Health Service is providing dying cancer patients with drugs that are five times less effective than those available privately and is refusing to treat them if they try to buy medicines themselves.

One drug for kidney cancer, routinely available through public health systems in most European countries but not to British patients, can reduce the size of tumours in 31% of patients, compared with just 6% of those prescribed the standard NHS drug.

The growing row over “co-payments” has prompted the labour government to reconsider the ban. Alan Johnson, the health secretary, has promised a “fundamental rethink” of the policy.

The shift comes as increasing numbers of cancer doctors defy the official Whitehall ban and allow patients to pay for drugs while still receiving NHS care.

Doctors at the Royal Marsden hospital in London and consultants at the NHS trust in Swansea are offering patients NHS care while they pay to receive drugs that will prolong their lives. Recently the Sunday Times revealed that about 16 consultants in Birmingham are ignoring the government guidance.

Research presented at the American Society of Clinical Oncology found that kidney patients taking the new drug Sutent lived six months longer than those prescribed alpha interferon, the NHS treatment.

The failure of the NHS to make more effective drugs available to cancer patients has been condemned as “unethical” by leading doctors.

John Wagstaff, professor of oncology at Swansea University, said: “This has created a very difficult situation for us. Having seen the latest data, I believe it is now pretty unethical to give many patients alpha interferon [rather than Sutent]. We are often forced to prescribe interferon because we do not have access to Sutent [on the NHS], but I am always upfront with the patients. I tell them what I think the most effective treatment is.”

Eight times as many patients in Germany and France receive Sutent as in Britain, according to figures held by Pfizer, the manufacturer. Sutent, which costs about £2,200 a month compared with about £800 for the NHS drug, is one of a number of life-prolonging new drugs at the centre of the co-payments row.

In advanced kidney cancer, when the patient cannot be treated with any other drug, Nexavar, another medicine, can double the period when the disease is held under control.

A trial of Nexavar, comparing the effect of the drug with a placebo, showed it to be so effective that the trial had to be halted early as it was considered unethical not to give it to all the patients in the test. Tumours were prevented from growing for an average of 5.5 months in patients taking Nexavar, against 2.8 months in those taking the placebo. Despite the findings, Nexavar is not routinely funded by the NHS.

Similarly, bowel cancer patients are up to four times as likely to see their tumour shrink if they pay for Erbitux than if they take irinotecan, the NHS-approved drug, alone. A study published in the New England Journal of Medicine in 2004 showed that 23% of patients experienced a reduction in the size of their tumour when they took Erbitux and irinotecan.

Other studies showed that just 5% of patients have the same benefit from taking irinotecan alone. Those taking irinotecan alone had their bowel cancer under control for 4.2 months, but this rose to 8.6 months when Erbitux was added.

Erbitux, costing about £3,000 a month, is funded for bowel cancer in most European countries. Patients in France are 13 times, in Spain 10 times and in Germany nine times more likely to get the drug than Britons.

The drug Avastin offers similar benefits. Research presented earlier this year showed that patients who receive Avastin and routine chemotherapy before surgery are twice as likely to be alive two years later as those who receive only the chemotherapy available on the NHS.

A former fireman who developed liver cancer after 25 years’ service has been told that if he pays for the only drug that can treat his disease his NHS care will be withdrawn.

Barry Humphrey, 59, from North Walsham, Norfolk, was told by NHS doctors that the drug Nexavar was the only available treatment for his advanced liver cancer.

However, consultants at Addenbrooke’s hospital in Cambridge said the drug was not routinely funded by the NHS and told him that if he paid for it he would be billed for the rest of his NHS care.

Humphrey believes his cancer is linked to his time as a fireman. His cancer was caused by cirrhosis of the liver after he contracted hepatitis C. He believes he caught the virus from a casualty while on duty.

Research presented at the American Society of Clinical Oncology found patients with advanced liver cancer survive for an average of 11 months if they take Nexavar, while those denied the drug live for just eight months.

Humphrey’s wife Hazel, 58, who also worked in the fire service, said: “Doctors said this would ‘not be viable’ because we would be deemed as opting out of the NHS and would need to pay for everything.

“I think it is absolutely disgraceful. When people are terminally ill, they want to spend as much time as they possibly can extending their life expectancy.” She said the couple know the drug will not provide a cure but should have the right to spend their savings to prolong her husband’s life.

They plan to sell a flat that they have been renting out to raise the cash for the drug, which costs about £3,000 a month. Humphrey, who has four children, six grandchildren and helps to care for his elderly mother, said: “I think this is morally wrong and indefensible.”

Cambridge University Hospitals NHS Foundation Trust, which runs Addenbrooke’s, said: “We are complying with the national guidance which says we cannot allow co-funding.”

The public’s view

A poll for The Sunday Times shows strong support for allowing co-payment in the National Health Service, with 89% saying that people who buy additional cancer drugs should continue to get free NHS treatment.

Only 5% think allowing co-payment would create a two-tier NHS. Until now this has been the position taken by Alan Johnson, the health secretary.

Ministers had feared that allowing co-payment would upset less well-off patients, but the YouGov poll of nearly 1,800 people shows strong backing across the social spectrum and supporters of all three main parties.

From:
http://www.timesonline.co.uk/tol/life_and_style/health/article4138237.ece

NHS at 60- NICE roadblock deprives patients as big drugs companies shift trials from UK

NHS at 60- leading pharmaceutical groups are cutting back on clinical research in the UK, claiming insufficient commitment by the labour government and the National Health Service to support new drug development.

Pfizer of the US, Roche of Switzerland and Merck-Serono of Germany are among the companies which have told the Financial Times they have, or will, reduce the number of British patients enrolled in trials to test experimental medicines for life-threatening diseases such as cancer.

The drug companies are increasingly frustrated by the National Institute for Health and Clinical Excellence, the labour government’s medicines advisory body, which last week handed them fresh setbacks by advising against NHS use of Pfizer’s Avastin and Merck-Serono’s Erbitux.

The result, the companies claim, is that few patients in Britain are receiving “gold standard” treatment so there is too small a group against which to compare their experimental drugs.

Chris Brinsmead, head of the UK arm of AstraZeneca and newly appointed president of the Association of the British Pharmaceutical Industry, the trade body, said a sample of just four companies had revealed that more than 20 trials had failed to get off the ground since the start of last year because they could not recruit patients.

“Two or three years ago, this would have just been hypothetical,” he said, stressing that the UK’s relative share of global clinical trials was already in decline although absolute numbers were stable. “It would be a great shame if the trend continued.”

The warnings are a fresh embarrassment for the labour government, which has stressed its commitment to pharmaceutical research in the UK while imposing a fresh 5 per cost cut after unilaterally scrapping the existing price contract with industry only halfway through its five year term.

Denise Richard, head of the UK oncology business division at Merck-Serono, the German drug company, said a large cancer trial her company had supported three years ago with free medicine and a grant of several million pounds was “the last time we will invest such a massive amount until we see a better return”.

She said that if her company had previously allowed her to include about 20 British centres with cancer patients as part of international clinical trials, it was now willing to permit only four or five “to provide a bit of data from the UK”.

Pfizer has already recently cancelled UK participation in four clinical trials, including one for cancer, because it could not recruit sufficient patients who were taking the existing international “gold standard” approved drugs against which to compare with Avastin, its experimental treatment.

Harpal Kumar, head of Cancer Research UK, said: “In the long-term there is a serious risk that if we get to the point where none of the new drugs are being used in the UK, the trials won’t eb done here.”

From:
http://www.ft.com/cms/s/0/f0e08f2a-42ee-11dd-81d0-0000779fd2ac.html?nclick_check=1

Doctors for Reform fight NHS order to halt cancer care

A group representing nearly 1,000 doctors is preparing to mount a legal action against the health service to stop care being withdrawn from patients who want to pay for their own cancer medicines.

It is seeking a judicial review of the Department of Health policy that forces patients to pay for all their treatment if they buy any additional medicine.

Many patients would like to buy extra drugs that are not offered as part of their treatment because the National Health Service has ruled that the benefits do not justify the costs. The labour government fears that if patients make the purchases, called co-payments, it will lead to a “two-tier” NHS.

Doctors for Reform believes patients should be given the freedom to choose. Its intervention follows a campaign by The Sunday Times highlighting the plight of breast cancer sufferers denied the opportunity to improve their chances by paying privately for drugs.

Last December we reported the case of Colette Mills, a breast cancer sufferer from Stokesley in North Yorkshire, who was told that if she topped up her medication with privately bought drugs she would have to pay for her entire treatment – about £10,000 a month.

The Department of Health has issued guidance to health trusts warning them that co-payments are not allowed. In December Alan Johnson, the health secretary, reiterated the rules.

Doctors for Reform has teamed up with Halliwells, the law firm, to challenge the ruling. Halliwells is offering its services free as the doctors are trying to raise £35,000 in donations towards government legal fees if they lose.

The doctors point out that examples of co-payments already exist in the NHS, for instance in dental care.

Dr Christoph Lees, a steering group member, said: “Doctors are caught in a terrible dilemma: do you tell a patient about a drug that could improve their quality of life, or do you pretend it doesn’t exist?”

Another cancer patient, Debbie Hirst, 56, from St Ives, Cornwall, began legal action against her local NHS trust to win the right to pay for the drug Avastin. Legal judgment was averted when the trust decided to treat Hirst as a special case and paid for the medicine.

For more information, see www.doctorsforreform.com

From:
http://www.timesonline.co.uk/tol/life_and_style/health/article3646250.ece

Health Direct notes that the argument that allowing patients to buy their own drugs will create a two tier NHS system is specious as is the argument that it will disadvantage those who can't afford to do that.

It may create a 'three-tier' health care system.

With the bottom tier being the health care that the NHS can/is willing to give, the middle tier being those who can afford to pay for drugs not available through the NHS whilst receiving NHS care, and the 'top' tier being those who buy private health care.

Fighting cancer and the ‘unjust’ health service

Cancer sufferer Colette Mills explains why she is battling against NHS rules that bar patients from ‘topping up’ their care with private drugs.

What is it like to contemplate your own mortality? Colette Mills describes it as like standing on a ladder leading into a deep, dark pit: “Every time something happens you feel yourself slipping down another rung, but it’s dark, you’ve no idea how near you are to the bottom.” What she does know is that it’s a one-way journey. There is no coming back up.

Mills, a former nurse, could never have imagined herself as the standard-bearer in a battle against her former employer, the National Health Service. Yet in the last stages of breast cancer she has been embroiled in a legal action seeking a judge’s ruling on whether, as an NHS patient, she should be allowed to “top up” her basic hospital treatment with a drug that might radically improve her quality of life.

Four months ago, when the cancer had spread to her spine, hips and ribs, Mills, 58, was advised to take a course of Taxol, a form of chemotherapy. She had read about clinical trials showing that Avastin, another drug, appeared to make Taxol twice as effective if used in combination, and asked if she might be prescribed it.

Her consultant agreed that Avastin might be useful, but told her the drug was not available on the NHS as it had not been approved for use by the hospital trust in North Yorkshire. Mills offered to use her savings to pay the £4,000-a-month cost of the drug, plus its administration, herself.

But that, it turned out, was not allowed. She could not pay for some of her treatment without becoming a fully private patient and paying for all of it, pushing the cost up to at least £10,000 a month, far more than she could afford.

“So I was put in an impossible situation,” she says. “Avastin may only increase your lifespan by six weeks or six months but, believe me, when it’s your life, you’re not picky. I could not understand the logic. I’d had a scan privately when there was a two-week wait on the NHS – once I said that I’d pay I was able to have it the next day – and the hospital had no problem with that.

“If I go to the dentist I can mix my NHS and private treatment. No one complained when I topped up my children’s state education with extra maths and English – the school was very happy to take the credit for their good marks! The government says that to allow some people to buy extra drugs would be to undermine the fairness of the NHS. But this is not about fairness, it’s about social control. If one person can’t have something, no one should.”

She has practically lost count of the number of drugs she has taken over the years – the cancer was first diagnosed 26 years ago when her children, Simon and Karen, were four and two. As we talk we can hear Karen in the kitchen. Through an accident of circumstance, Mills tells me, both children are back at the family home looking out over the North Yorkshire moors, but one can’t help feeling that the chicks have flown protectively back to the nest in her hour of need.

Mills first noticed a lump on her breast when breastfeeding, but was told that it was a blocked milk duct and not to worry: “So, like a fool, I didn’t.” Back then she was working nights at Blackburn Royal Infirmary, having come over from Ireland, her birthplace, to train in Liverpool.

She most enjoyed her early years as a nurse in the rough and tumble of A&E, and is clearly a feisty character. “But I don’t fight everybody for everything,” she laughs. “This is a clear injustice. It’s inhuman.”

In those days there was no question of “co-paying”. The drugs were not very sophisticated and you were grateful for what you got. As she went for her first biopsy, the surgeon told her to “keep an open mind” about what might happen and she woke up to find she’d had a mastectomy. She still winces at the memory of the awful pink prosthesis that was regulation NHS issue and the impossibility of finding nice underwear.

Since then it has been a pitched battle, trying to hold the cancer back as it has inched forward with each scan. Being a nurse, Mills has tried to do everything she can to help herself, using complementary therapies such as reiki healing alongside her conventional treatment and reading her way though medical papers, one of which led her to Avastin and, inadvertently, to becoming a poster girl for other self-helpers who feel cheated by the health service.

As it is now too late to be prescribed the Avastin alongside the Taxol, Mills’s legal action is on hold until a doctor agrees to her trying it with another drug. But her willingness to speak up has encouraged a number of other patients to protest, including Debbie Hirst from Cornwall who is in a similar situation, who put her house on the market to pay for treatment but whose trust has just indicated that it will pay for her to be treated on the NHS as an “exceptional case”.

In Newcastle, Karen Gault, the mother of three-year-old Grace, is paying to be treated privately with Avastin to halt her bowel cancer – thanks to the generosity of friends and colleagues who have raised the money to allow her to do it. She is also appealing against her local hospital’s decision not to treat her on what her husband Paul says is a “slim possibility” that they might be reimbursed.

Mills’s solicitor, Melissa Worth, has had call after call from people caught in the same trap.

There is nothing in the NHS guidelines that specifically rules out co-payment, but the thought of allowing patients to supplement their treatment rouses strong emotions and goes to the heart of what it is reasonable to expect the health service to pay for, given finite resources. Alan Johnson, the health secretary, says that allowing some patients to access treatments that others could not pay for is unthinkable: “That way lies the end of the founding principles of the NHS.”

Professor Karol Sikora, a leading cancer specialist and adviser to the World Health Organisation, says this is ideology gone mad, medical communism. “Nobody pretends this isn’t a difficult issue, but there has to be a solution,” he says.

“Yes, it breaks down the principle of everything on the NHS being free at the point of delivery but one has to live in the real world – these drugs are freely available in Calais. Or patients can order them over the internet.

“We need to put this out in the open and ask some pertinent questions. Because it’s not just about paying for drugs. If the drug causes side effects that result in internal bleeding, or require surgery or intensive care, who pays for that? It would be simple to add on some insurance to the cost to cover such eventualities. But the real problem is that no politician sees it as a vote winner.”

Mills has come in for her fair share of criticism as well as support. Commenting on a story about her in the newspapers, one man said that this was an “end of life issue” and she should “get on with it”.

The whole thinking behind the “one size fits all” approach strikes her as absurd. “Should we all live in council houses even though some of us can afford to buy our own homes?” she asks. “Where does all this stop?”

She has not got long, although who knows with cancer. “At some point I will have to decide whether to carry on with the chemo or just stop it and enjoy whatever time I have left, but I’m not there yet,” she says.

Meantime, she keeps searching for an answer and fighting for her right to try whatever she can to prolong her life.

http://www.timesonline.co.uk/tol/life_and_style/health/article3294447.ece

Cancer patient runs out of time in NHS drugs funding postcode lottery

A woman suffering from breast cancer has run out of time to benefit from a potentially life extending drug which the National Health Service (NHS) denied her, even though she was prepared to pay for it.

Colette Mills has been told by doctors that in the four months since she asked for the drug the disease has taken such a hold in her body that the cancer will no longer respond to the treatment.

She is the victim of a ruling which states that any patient who wants to pay for additional drugs not prescribed by the NHS should lose their entitlement to their basic NHS cancer care and pay for all their treatment. She was prepared to pay for the drug but not her whole treatment.

Mills, a 58-year-old former nurse, said: “I am just absolutely gutted. I just cannot believe people make these decisions about other people’s lives. It wasn’t going to cost them. I was going to pay for it. How can they say this policy is far more important than somebody’s life?

“The NHS has taken this opportunity away from me and, if they are doing it to me, they are doing it to a lot of other women as well.”

The labour government claims that to allow some patients to pay for additional drugs on top of their NHS treatment creates a two-tier system between those who can and cannot afford them.

Asked about her future prospects, Mills said: “They are not hopeful of halting it. They will give you no promises. I didn’t ask and he [the doctor] didn’t say. It is not something I want to know just yet.”

Mills, a mother of two, launched a legal action to try to force the NHS to allow her to pay for the drug Avastin which she wanted to take alongside another medicine, Taxol, which is prescribed by the health service.

But during her four-month battle with the NHS, the breast cancer has spread to other parts of her body and doctors have told Mills it is too late for her to benefit from the combination of Avastin and Taxol.

An American trial has shown that taking the drugs in combination doubles the chance of preventing the disease from spreading compared to taking Taxol on its own. Taking Avastin in addition to Taxol is also likely to keep the disease under control for almost twice as long. Leading oncologists say Avastin offers a small but significant advantage in treating breast cancer.

Mills will now be prescribed an alternative medicine but does not know how successful this will be in stopping the cancer.

Several other cancer patients are also taking legal action to win the right to pay for medicines that are not available on the NHS. The patients’ lawyer, Melissa Worth, of the law firm Halliwells, said: “Colette has been told by her medical team that she may have missed her chance. "

"If she had been given the opportunity to take the Avastin when she first contacted her medical team about it, then she would have had three months’ treatment by now. Months down the line, the policy will need to change but for those patients currently fighting their NHS trusts, it might be too late.”

Becoming an entirely private patient would have cost Mills, from near Stokesley, North Yorkshire, about £10,000 a month instead of about £4,000 solely to pay for the Avastin and its administration.

Although she could have tried to raise the funds such as finding a loan, she believes it is a fundamental principle that the NHS should continue to fund her basic care for which she has paid through her taxes.

The Department of Health, however, said top-up payments would “undermine” the “fundamental principle of the NHS, now supported by all the main political parties, that treatment should be free at the point of need”.

Mills’s case has provoked a national debate about whether NHS patients should be allowed to pay for top-up treatments.

NHS chief executives, the Patients Association, Doctors for Reform and Saga, the organisation for the over-fifties, have all backed Mills and other patients in her situation since The Sunday Times and Health Direct highlighted their plight last year.

A group of Conservative MPs, including former shadow health minister John Baron, are campaigning for co-payments to be allowed.

From:
http://www.timesonline.co.uk/tol/news/uk/health/article3257529.ece

Health Direct finds it scandalous that the labour government is letting voters die just to save the NHS money.

The labour government wants to avoid a two tiered health system, but this is precisely what we have, not least as some have private health insurance and most of us do not. Their argument just does not work.

Health Direct can hardly understand why it is that the government would rather its citizens die in situations where they could receive treatment (albeit at private expense) all to satisfy the ideological goal of avoiding a two-tiered healthcare system.

Since it is clear this already exists with widespread healthcare postcode lotteries which they are creating- how many more people will die at Gordon Brown's hands?

NHS threat to halt care for cancer patient if she buys her drugs

A woman will be denied free National Health Service treatment for breast cancer if she seeks to improve her chances by paying privately for an additional drug.

Colette Mills, a former nurse, has been told that if she attempts to top up her treatment privately, she will have to foot the entire £10,000 bill for her drugs and care. The bizarre threat stems from the refusal by the government to let patients pay for additional drugs that are not prescribed on the NHS.

Ministers say it is unfair on patients who cannot afford such top-up drugs and that it will create a two-tier NHS. It is thought thousands of patients suffer as a result of the policy.

Mills, 58, is thought to be the first to take a public stand in challenging her NHS trust to allow her to pay for the drug as part of her NHS treatment.

She wants to top up her treatment with Avastin. “The policy of my local NHS trust is that I must be an NHS patient or a private patient,” she said.

“If I want to pay for Avastin, I must pay for everything. It’s immoral that the drugs are out there and freely available to certain people, yet they say I cannot have it.”

With many “wonder drugs” in the pipeline that the NHS is unlikely to fund, her predicament is likely to be shared by increasing numbers of patients who could afford additional life-extending drugs but not the cost of their entire care.

Mills, a mother of two, who lives near Stokesley in North Yorkshire, is being treated with the drug Taxol, which is available on the NHS, but believes that her chances of halting the cancer would be improved by also using Avastin.

She is prepared to pay South Tees Hospitals NHS Trust for the Avastin and the cost of its administration. This would amount to at least £4,000 a month. Mills does not want to pay for all of her NHS treatment, however.

“The costs would increase from £4,000 a month to about £10,000 to £15,000 for all my care. I would need to pay charges for seeing the consultant, for the nurses’ time, for blood tests and scans,” she said.

Some doctors support her case. Professor Karol Sikora, medical director of CancerPartners UK, a private cancer company, said: “This is unfair to taxpayers who are entitled to NHS care. If this patient wishes to pay for another drug, that should be her choice.

The patient should be invoiced by the NHS for the extra treatment, with a mark-up to cover the hospital’s costs.” The government is opposed to the so-called “co-payments” because they would lead to patients in the same NHS ward receiving different drugs based solely on their ability to pay.

But doctors say this already happens where private and NHS patients are treated at the same NHS unit.

Some patients have got access to the drugs by going fully private. Others have continued with their basic NHS care while receiving an additional drug from a private company at home. By contrast, Mills believes that it is her right for her local NHS trust to provide the drug if she is prepared to pay for it.

South Tees Hospitals NHS Trust said: “If a patient chooses to go private for certain drugs they elect to become a private patient for the course of their treatment for that condition. That is the trust policy.”

The Department of Health said: “Co-payments would risk creating a two-tier health service and be in direct contravention with the principles and values of the NHS.”

From:
http://timesonline.co.uk/tol/life_and_style/health/article3056691.ece

Health Direct points out that this postcode lottery is a very strange stance for the Trust to take - but then again, perhaps not. We are after all dealing with the petty bureaucracy of the NHS - when NHS dental practices, those which remain that is, are allowed to mix private and NHS care.

It would be interesting to hear the same views of the anonymous spokesperson (or a senior manager) if his/her life, or that of a close relative were on the line. I'll bet you anything a way would be found round the rules. These are meant only for the hoi polloi who have the temerity to have saved up enough for additional care.

Cancer survival rates- UK patients are losing out

Cancer survival in the UK is still below the European average, despite recent improvements, a report says. Survival rates in lung, breast, prostate and colorectal cancer were lower in the UK compared with everywhere except eastern Europe.

The Eurocare studies of 23 countries looked at the outcome of 2.7m new cases between 1995 and 1999. Government cancer "tsar" Mike Richards said poor results in the UK had been due to delays spotting the disease.

The studies, published in the Lancet Oncology journal, are the largest international projects to compare the survival of patients from 11 different cancers. They reveal wide differences in death rates from both rare and common types of cancer.

"Our concerns illustrate the considerable challenges that now face the UK government if it is to make the NHS work efficiently and effectively" Editorial, Lancet Oncology

The best performers are Nordic countries such as Sweden and Norway and central European countries.

Ranked just beneath them are south European countries, and lower still is the UK, followed by Eastern European countries.

While death rates have fallen in the UK, they have also fallen in the rest of Europe.

Some eastern European countries almost matched the UK's performance despite spending less than a third of the UK's health budget per head of population.

Overall, for men Sweden had the best survival rates with 60% of cancer patients alive five years after diagnosis, compared to between 40% and 50% among the UK countries.

For women, Sweden and Iceland were top on 62% with Wales, England and Northern Ireland just below the European average of 56%, while Scotland was among the worse on 48%


Delayed diagnosis

An editorial in the Lancet Oncology questioned whether the NHS Cancer Plan, launched to tackle poor survival rates in the UK, was working.

"Eurocare is an important indicator of oncology provision in Europe, giving insight into healthcare effectiveness and the improvements needed. Our concerns illustrate the considerable challenges that now face the UK government if it is to make the NHS work efficiently and effectively."

Professor Richards conceded that while some of the data from European countries could be flawed, this was unlikely to account for all of the differences between countries.

"The findings show that many more lives could be saved if the outcomes in all countries were brought up to the standards of the best countries."

He added: "The poor results from the UK were attributable mainly to patients having more advanced disease at diagnosis than patients in other European countries."

'Must ensure access'

The NHS Cancer Plan was launched in 2000, and promised an increase in specialist staff and equipment to tackle the delays in diagnosing and treating cancer.

Strict targets on the waiting times for scans and appointments were set.

Professor Richard Sullivan, Cancer Research UK's director of clinical programmes, said "Cancer is still not being diagnosed early enough in all cases. And we need to ensure that patients have access to the best surgery, radiotherapy and other treatments. This study shows that cancer is certainly not a 'ticked box'. We need a sustained effort to beat the disease."

From:
http://news.bbc.co.uk/1/hi/health/6955545.stm

Health Direct readers will not be surprised by the latest shocking news on cancer survival rates in the UK. On Aug 09, 06 we posted: Postcode lottery for cancer, hearts and mental health King's Fund reports

Wide variations in NHS spending may be denying patients fair access to drugs and treatment, a study says. The King's Fund think tank found that some English trusts spent four times as much on certain diseases than others. The research, compiled from government data from 2003-4 to 2004-5, also showed mental health got the most cash, followed by heart disease and cancer.

Researchers also analysed overall spending on particular disease groups. The greatest proportion - over £7bn - was spent on mental health, with heart disease absorbing nearly £6bn and cancer just over £3.5bn.

As long as the Labour govt continues to use the National Institute fro Curbing Expenditure to block the use of new cancer drugs like Herceptin then UK patients will contiue to die unnecessarily.

On 4 Apr o6 Health Direct posted: Cancer: There are life-saving drugs. So why can't we have them?

Thousands of cancer sufferers are being denied life-saving drugs because of delays and bureaucracy in making them available on the NHS. The hold-ups are a matter of life and death for desperate people who have been diagnosed with cancer of the breast, colon or lung, or with a brain tumour.

Doctors are furious that drugs such as Avastin, which is used to treat colon cancer, and Cetuximab, a treatment for head and neck cancers, are being blocked by the National Institute for Curbing Expenditure (NICE), a labour government created quango set up to decide which drugs should be routinely prescribed on the NHS.

But backlogs mean that Nice is taking up to two years to make its decisions. That means drugs such as Avastin, which have been officially licensed and approved for use, are currently denied to NHS patients although well-off people can obtain them privately. In some cases, patients are being told they face a three year wait if they want to obtain these life-saving treatments free.

Cancer charities, MPs and leading specialists are warning that this is creating a two-tier system where only those with money, and the well informed, can afford the drugs, which cost many thousands of pounds.

They also condemn the postcode lottery over prescribing of cancer drugs, which means that some people are turned down for treatment but others are successful in proving that their case is "exceptional", depending on what part of the country they live in.