August 26, 2008

One in Four Specialists Do Not Mention Costly Drugs

By Emma Brady

Midlands cancer patients are being kept in the dark about new treatments that could extend their lives, it was claimed today.

One in four myeloma specialists questioned in a survey admitted 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UK poll comes less than three weeks after the National Institute for health and Clinical Excellence (Nice) issued draft guidance which rejected four kidney cancer drugs - Sutent (sunitinib), Avastin (bevacizumab), Nexavar (sorafenib) and Torisel (temsirolimus) - claiming they were not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 costs between pounds 20,000 and pounds 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.

A total of 103 myeloma specialists in England, Wales and Scotland took part in the survey. The doctors revealed how they struggled with NHS bureaucracy and cost-cutting to obtain the best treatments for patients.

One in four avoided telling patients about licensed drugs awaiting approval by the NHS watchdog body the National Institution for health and Clinical Excellence (Nice).

Primary care trusts are reluctant to pay for new drugs that have not been given the Nice green light.

In 96 per cent of cases, doctors that chose to keep quiet said they did so because it might "distress, upset or confuse" patients.

Three quarters said cost issues were a consideration, 40 per cent cited "lack of evidence" and 29 per cent argued there was "no point" discussing treatments patients could not have.

Almost three quarters (74 per cent) had experienced PCTs blocking applications for treatments, mainly because of cost, while a similar number 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 myeloma patients cannot get access to life-extending treatments widely available in Europe. Post-code prescribing is rife 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."

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 has a difficult job and has to make difficult decisions across new drugs and treatments.

"I think under the Cancer Plan we would be looking at how vital cancer drugs are funded and distributed. It's a real shame we're 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.

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