Cancer patients in the Midlands are being kept in the dark about new treatments that could extend their lives, it has been claimed.
One in four myeloma specialists questioned in a survey admitted to hiding facts about new treatments that may be tough to obtain on the NHS, citing the main reason was to avoid upsetting or confusing patients.
The Myeloma UK poll comes less than three weeks after the National Institute for health and Clinical Excellence (Nice) issued draft guidance which rejected four kidney cancer drugs - Sutent (sunitinib), Avastin (bevacizumab), Nexavar (sorafenib) and Torisel (temsirolimus) - claiming they were not cost-effective. Each drug costs between £20,000 and £35,000 per patient per year.
Myeloma is a bone marrow cancer that affects around 3,800 people each year in the UK. Of these, 2,600 are likely to die from the disease.
A total of 103 myeloma specialists in England, Wales and Scotland took part in the survey. The doctors candidly revealed how they struggled with NHS bureaucracy and cost-cutting to obtain the best treatments for their patients.
One in four confessed that they avoided telling patients about licensed drugs still awaiting approval by the NHS watchdog body the National Institution for health and Clinical Excellence (Nice).
Primary care trusts are generally reluctant to pay for new drugs that have not yet been given the Nice green light.
In 96 per cent of cases, doctors that chose to keep quiet about hard to obtain treatments said they did so because it might “distress, upset or confuse” their patients.
Three quarters said cost issues were a consideration, 40 per cent cited “lack of evidence” and 29 per cent argued that there was “no point” in discussing treatments their patients could not have.
Almost three quarters (74 per cent) said they had experienced PCTs blocking their applications for treatments, mainly because of cost, while a similar number also reported delays of more than a month when applying for funding for myeloma treatments awaiting or undergoing Nice appraisal.
Eric Low, chief executive of Myeloma UK, said: “It is appalling that myeloma patients cannot get access to life extending treatments, which are widely available throughout Europe. Post-code prescribing is rife in the UK with some patients getting access to life extending treatments ahead of a Nice decision whilst others are left to die. Myeloma UK wants to engage with the Department of Health to find a solution to this growing issue.”
Professor Lawrence Young, head of Cancer Research UK’s Institute for Cancer Studies at Birmingham University, claimed the Nice approval process “may not necessarily be the best way to decide whether they are funded or not.”
He added: “It’s very difficult for us not to feel despondent when we hear news like this while trying to develop new drugs. I accept Nice have a difficult job to do and has to make difficult decisions across all new drugs and treatments.
“However I think under the Cancer Plan we would be looking at how vital cancer drugs are funded and distributed. It’s a real shame that were still at this point.”
Nice is currently reviewing a number of myeloma treatments including the drug Revlimid, which trial data suggest could extend the life of patients by three years.
The drug obtained its UK licence in June 2007 and Nice is expected to make a decision on whether it should receive NHS funding in 2009.
Revlimid is already widely available across Europe.