Cancer sufferers refused drugs despite Government pledge on funds
Dying cancer patients have been refused costly life extending drugs on cost grounds despite a Government promise to end the “scandal” forever.
Their requests have been rejected by regional health authorities who were accused of operating covert “blacklists” to restrict dozens of treatments to save money.
An investigation by The Sunday Telegraph has uncovered more than 80 cases in which desperately sick NHS patients have been refused the cancer drugs their doctor sought, in the four months since a £200 million fund was introduced to stop health authorities rationing treatments.
The fund was a key move by the Coalition so that those suffering from cancer would never again be refused drugs on grounds of cost.
Ministers were responding to years of anger over a system which meant patients were unable to secure life-extending drugs because central NHS rationers had decided the treatments were not “cost effective”.
Announcing the fund last summer, Andrew Lansley, the Health Secretary, promised to end “the scandal” of cancer patients being refused the drugs that their doctors sought, because of restrictions by the National Institute for Health and Clinical Excellence (NICE).
A £50 million stopgap version of the fund was launched in October, before the annual £200 million investment starts in April.
But this newspaper’s investigation has raised serious concerns over its operation, including:
* At least 86 cases involving terminally-ill patients being turned down;
* Extreme variations in access to drugs, with one NHS region promising free access to more than three times as many cancer treatments as another;
* Local policies so restrictive that in many parts of the country, consultants are expected not to even bother asking for drugs which are not on the “priority lists”.
In its first four months, the fund has paid for approximately 1,300 patients’ drugs – even though research last March suggested up to 20,000 cancer patients’ lives were being shortened each year by drugs rationing.
The Government has allowed each NHS regional health authority to set its own rules about which drugs are put on priority lists, creating a postcode lottery across the country.
If treatments are not on the list, patients and their doctors have to fight harder to justify why they should get them.
Bureaucrats have created complex structures, leaving terminally-ill patients to spend their last months fighting for drugs which could increase their survival.
The policies say every possible funding route for drugs must be exhausted before the NHS will even consider dipping into the fund.
Cancer charities warned that some NHS authorities were attempting to “drive a coach and horses” through the Government pledge.
They fear the £50 million fund may actually end the financial year underspent because of the restrictions.
Andrew Wilson, chief executive of charity The Rarer Cancers Foundation, said: “We are deeply concerned that health authorities are creating really restrictive policies which go entirely against the spirit of the fund – which was that clinicians would be able to decide what treatment their patients need.
“Some organisations are effectively operating blacklists of drugs, while others are making every patient go through lengthy bureaucracy to apply as an exceptional case, when in fact they are a cancer patient requiring treatment should be sufficient. The way some of these organisations are operating drives a coach and horses through the principle of the scheme.”
In most parts of the country, if a patient requires a treatment such as Avastin for bowel cancer – which NICE says is too expensive – their doctors must first apply to see if their primary care trust will fund it as an “exceptional case”.
If that is refused, as would normally be the case, a separate application is then made to request authorisation from the cancer drugs fund – and if that too is refused, patients and doctors are left to attempt an appeal.
Patients refused include those seeking Avastin for advanced bowel, breast and brain cancer, Tyverb for breast cancer and drugs to treat tumours of the bladder and kidney.
NHS authorities said they had turned down requests because they did not think there was enough evidence patients would benefit from drugs their doctors sought. In other cases, they were refused help because their medical history did not match the precise criteria drawn up by trusts.
There is also concern over the “postcode lottery” in availability of drugs.
NHS North West has cited 22 drugs which should normally be funded – while NHS South Central, spanning five counties from Oxfordshire to the Isle of Wight, lists just six treatments which would automatically be allowed.
The policies are so restrictive that in Yorkshire and the Humber, just 82 patients have been given funding. Yet across the East of England, with a similar population, 201 cases were funded.
Even those areas which seemed to have the most generous policies have tightened their belts as end of financial year approaches.
In the North West, which had backed the use for Avastin for some advanced breast cancers, and Glivec for cancer of the stomach, says patients who have not been given funding will now have to wait until April before their cases are even considered.
Several have changed their rules even in during the four months since the fund was set up, so that several patients in London were denied drugs under one set of criteria, only to have their cases reconsidered all over again as their health declined.
Mike Hobday, head of policy at charity Macmillan Cancer Support, said he was “very worried” by the findings of the investigation.
He said: “Every cancer patient should get the drugs their doctor recommends, regardless of what type of cancer they have, or where they live.
“A few extra months towards the end of a patient’s life can mean the difference between seeing a child get married or graduate.”
Health Minister Anne Milton said: “Since October, more and more patients are being treated with life-extending drugs that they wouldn’t have got under the previous system. Demand for the fund will vary across the country; we set up the fund in order to balance out existing variation in access.”
Tags: Andrew Lansley, Cancer, cancer drugs, cancer survival, Conservatives, Killer Quango, NICE, NICE blight, postcode lottery