Cancer sufferer fears new fight for wonder drug

10:33am Monday 17th November 2008

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Health watchdog the National Institute for Health and Clinical Excellence has made an initial decision not to recommend the use of cancer wonder drug Revlimid on the NHS because it is not “cost-effective”. Cancer sufferer COLIN ROSS, who won access to the drug in a landmark legal battle at the High Court, tells The Argus it is time lives came before money.

I was working overseas as an oil and gas engineer when the symptoms of what was to turn out to be an incurable cancer called myeloma set in.

It is a cancer of the blood and bone marrow and by May 2004, I was only 51 but I couldn’t stand up or move. I flew home to Horsham immediately and was taken to the Princess Royal in Haywards Heath.

After initial examinations there I was moved to the Royal Sussex in Brighton and told that I had myeloma and would not live to see Christmas that year.

It turned my life upside down.

Suddenly I was registered disabled and my working life was over. I was in a full body corset, needed a walking frame to move and was totally dependent on carers.

It was at that point that through my own research, I found out about the help group Myeloma UK and they told me about Revlimid.

It had not yet been tested and I assumed it may not be available in time to save my life.

In March this year, my condition deteriorated severely and The Royal Marsden in Surrey, where I was being treated, told me I only had two months to live unless they could get hold of Revlimid, which was available.

The problem was it hadn’t been approved by the National Institute for Health and Clinical Excellence (NICE) and therefore it needed to come from my local Primary Care Trust (PCT) in West Sussex.

My application to the PCT was rejected on the grounds that the drug didn’t have a long enough medical track record and at a cost of £5,000 a month it was not financially viable.

I applied and appealed over the course of 17 weeks even though time was evidently running out.

By coincidence, I met a woman who had applied for Revlimid and been granted it within eight days. She lived 12 miles away from me but was just within the East Sussex PCT zone. With assistance from Myeloma UK, I was granted the legal aid to take court action.

After two days at the High Court in London in September, the judge ruled that West Sussex PCT should get Revlimid to me in two days.

The results have turned my life around. Blood tests taken last week showed that paraprotein – the abnormal proteins in my blood caused by cancer – had dropped from 57g per litre to just 4g. But this legal struggle came at great monetary and physical cost.

Had the PCT granted me Revlimid when I applied it would have cost the West Sussex taxpayer around £25,000 – instead it cost more than £100,000 in legal costs.

It worries me sick to think that if it is not fully licenced by NICE soon I might have to go through that all over again in four months’ time when my course of Revlimid runs out.

It also worries me that someone else may have to go through what I went through.

When my struggle for Revlimid began in March it was believed the drug may extend your life by one year, now experts are estimating that it will give you an extra three years.

The PCT quibbled about the cost but it is not just time alive Revlimid is buying me, it is buying the time for new drugs and technologies to be developed – particularly stem cell technology.

Despite being incredibly grateful that the High Court ruled in favour of me and incredibly grateful to Myeloma UK for all of their help, I dread the thought that we may have to go through it all over again in four months.

A spokeswoman from West Sussex PCT said: “We await hearing from the Royal Marsden what treatment they recommend for Mr Ross at the end of the current programme.

“The PCT has no plans for Mr Ross to go through court again.”

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