One in four NHS patients denied latest cancer drugs David RoseData gathered from 62 NHS trusts shows that 2,065 patients appealed recently to health service managers to receive high-cost cancer treatments that are not yet approved or have been rejected by the NHS value-for-money watchdog.
Of these, 536 (26 per cent) were refused treatments in the past 20 months, according to figures obtained by the charity Rarer Cancers Forum (RCF) under the Freedom of Information Act.
Trusts that responded to the request for information represent about 40 per cent of primary care trusts in England. This suggests, the charity said, that more than 1,300 patients across the country may have been denied life-extending drugs.
These drugs are widely available throughout Western Europe, and in some cases in Scotland, but the RCF said that patients in England were effectively being “left to die” if they could not persuade their local trusts to fund treatment.
The report comes after patients with advanced kidney cancer were denied four treatments on the NHS under new guidelines issued by the National Institute for Health and Clinical Excellence (NICE), which assesses the cost-effectiveness of new medicines in England and Wales.
The draft guidance published last week, which could deprive thousands of patients access to effective medication for advanced kidney cancer, has angered patients, doctors and cancer charities.
NHS trusts have a legal obligation to provide treatments approved by NICE. In the absence of such approval, if a doctor thinks that someone would benefit from a new medication, the patient must appeal to a committee at the local trust, which can choose to fund it as an exceptional case.
Those who are refused must settle for a less effective treatment or pay privately for the drugs – at the risk of having all their other NHS care withdrawn.
Among the most popular nonapproved treatments sought by patients include those for cancer of the kidney, lung, pancreas, colon, breast and multiple myeloma.
Figures obtained from 62 trusts show widespread regional variations in the chances of being granted access to these drugs.
Of 25 patients living in Mid Essex who applied for nonapproved treatment, only one had a request rejected, while all three patients who made requests in neighbouring South West Essex were turned down, the Taking Exception report notes.
Penny Wilson-Webb, the chief executive of the RCF, said that the approvals procedure was often chaotic and varied widely across the country. Patients were being forced to “plead for their lives” in a situation that was “bizarre and demeaning”, she said.
“These life-and-death judgments are made behind closed doors by secretive ‘priorities panels’ dominated by NHS managers,” a RCF spokesman said. “With each panel reaching their decisions in a different way, the report shows a striking postcode lottery in the chances of having an ‘exceptional request’ approved,” they added.
Nationally, the most sought after drug was Sutent (sunitinib), for advanced kidney cancer, one of the four medications rejected by NICE in its draft guidance.
It was also the most commonly denied drug, refused to 119 of the 219 patients who applied for it between October 2006 and last month.
Other drugs that were likely to be refused were: Erbitux (cetuximab) for colorectal cancer; Velcade (borte-zomib) for multiple myeloma; and both Nexavar (sorafenib) and Avastin (bevacizumab) for kidney cancer, which were also rejected by NICE.
Case study: I'm going to have to sell my house
For Andrew Crabb, a new drug is the only hope to prolong his life. The father of three from Abingdon, Oxfordshire, is considering selling his home to pay for his treatment after his local primary care trust refused to fund the drug.
Sutent is now the most common cancer medicine unavailable on the NHS. The National Institute for Health and Clinical Excellence has rejected the treatment because it is “not cost-effective” for kidney cancer.
Mr Crabb, 49, says that his health has improved dramatically with Sutent, but he and his wife, Dianne, must now find more than £3,000 every six weeks to pay for it. The former bricklayer had kidney cancer diagnosed last October and was told that he might not live to see Christmas.
“They told me my cancer was like a galloping racehorse, it was so aggressive,” he said. He took part first in a trial for Torisel, which shrank his tumours but weakened his bones, before starting to take Sutent in May.
“The difference is amazing — I'm driving again, even cycling and fishing,” he said.
Mr Crabb has cashed in his pension and is relying on friends' donations. His local hospital, Oxford Radcliffe Hospitals NHS Trust, is ignoring government advice that patients who pay for “top-up” drugs privately must forfeit their NHS treatment.
Jean Murphy, 63, of Salford, unsuccessfully took her case to the High Court after her local trust refused to pay for the drug.
Mr Crabb's tumours are now mostly in retreat. He said: “We'll have to sell our house.I've paid tax and national insurance all my life, so why can't I have it?”
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