Northampton couple take campaign to keep funding for lifesaving cancer drug to Downing Street

GIST Support UK and MPs go to Downing Street to campaign against the removal of Regorafenib from CDF list
GIST Support UK and MPs go to Downing Street to campaign against the removal of Regorafenib from CDF list
  • A review of rare cancer drugs means lifesaving treatment may be removed from funding list next month
  • Campaigners already won an appeal to have the drug reinstated earlier this year
  • Cancer charity now needs MP support to take the matter to the House of Commons

A Northampton man who suffers from a rare type of cancer met with MPs in Downing Street this week in his campaign to stop the drug that keeps him alive from being withdrawn.

Richard Bassett, of Abington Avenue, and his partner Jane, made headlines earlier this year as they aimed to get 100,000 signatures on their petition to stop Regorafenib, a treatment for GIST (Gastronintestinal Stromal Tumour), from being cut from the Cancer Drugs Funding (CDF) list.

After receiving a total of 103,000 signatures the drug was found to have “significant clinical benefit” and was reinstated, but now, only months later, it is at risk of being cut again. If that happens, Mr Bassett, and others like him, will be left without treatment for their cancer and will effectively be left to die.

On Tuesday, the couple, who met while at university studying for degrees in natural sciences, marched to number 10 Downing Street with fellow campaigners from GIST Support UK to fight the cut.

Miss Janes, now a water science researcher at Cranfield University, said: “The day went well. We were given a meeting room where we spent the afternoon sharing all our information about the importance of Regorafenib with MPs.

“What we want is to ensure that the drug will continue to be publicly availabe on the NHS, as it continues to be in Scotland. Now the next step is to persude as many as possible to sign an early day motion to get the matter discussed in the House of Commons.”

Although the drug itself was recently put back on the CDF list, around the same time a CDF review was held to redefine cancer ‘rarity’. As a result, only treatments that would be prescribed to less than 100 people across the country will be funded as rare cancer drugs from July 2015.

“This would be the case for GIST,” said Miss Janes, “but the problem is that the review has lumped it within all types of bowel cancer, which is more common, so it is not being treated as rare.

“So, as Regorafenib has been deemed less effective for bowel cancer in general, even though it is very effective for people with GIST specifically, it is unlikely to qualify for the funding and looks to be removed from the list by next month.

“We are absolutely devastated by this news. It feels almost as if the review was held now on purpose to have Regorafenib removed and it’s incredibly frustrating - it’s all very strange and doesn’t really make any sense.

It’s severely discriminating against rare cancer sufferers and will have a huge impact on them

Victoria Janes

“It is severely discriminating against rare cancer sufferers and will have a huge impact on them. We’ve gone through all the feedback forms but they are never going to listen to us alone.”

Although there are three different treatments that can be used by GIST patients, this particular drug is the only one that is effective for Mr Bassett and he needs to take it on a constant basis.

But it would cost the 28-year-old meteorology PhD student at least £1,000 per week to pay for privately.

Miss Janes said: “There is no other option - if the drug is removed, he will die. It’s a brutal decision and the whole process has been exhausting.”

While GIST Support UK’s #100,000 Voices campaign in January called for public signatures to raise awareness of the issue, the charity now needs to target the support of MPs, to make sure the issue is formally discussed in the House of Commons.

“It’s difficult because MPs are very busy dealing with lots of issues, but I am sure that if as many as possible take the time to really look at the wording of these documents and proposals, they will see that it doesn’t make any sense and that this is a mistake.”

Miss Janes, Mr Bassett, and GIST Support UK are urging Members of Parliament to show their support for the motion by adding their signature here: http://www.parliament.uk/edm/2015-16/125. MPs James Gray (Con, North Wiltshire), Julian Sturdy (Con, York Outer) and Stuart Andrew (Con, Pudsey, Horsforth & Aireborough) have already pledged their support and joined the campaigners at Downing Street on Tuesday.

The small charity and its campaign is run solely by volunteers. To find out more or to make a donation, visit: http://www.gistsupportuk.com/