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."

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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.

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