Press Release – 6 March 2015

For immediate release

Contact:  Michelle Aherne – 01342 313994 or 07867 498260


“It’s obscene beyond expression how people can have the arrogance to put a price on young lives” Irvine Welsh – Author (on the decision to withdraw Regorafenib from the CDF)

Sam Waller GIST #100000voices

Sam Waller, 35, with his family

Sam Waller 35 lives in East Grinstead with his wife Michelle and two young sons Joseph (4 ½) and Henry (1 ½).  Sam has Wild-Type Gastrointestinal Stromal Tumour (GIST), a rare, incurable cancer found in the digestive system which was diagnosed just a week before Joseph was born.  Sam needed six blood transfusions and nearly died.

There is currently no cure for inoperable GIST, but targeted drugs enable a patient to live for considerably longer, providing both time with their families and for research into other solutions to continue.

One of these vital, “last resort” life-extending drugs is Regorafenib but recently Sam learnt that this will no longer be available to him following its removal from the Cancer Drugs Fund with no right of appeal.  Philip Hunt, Labour’s Deputy Leader in the Lords called this decision “extraordinary and perverse”.

Sam’s wife Michelle was naturally heartbroken when she learnt the drug wasn’t going to be available to her husband:

“I was devastated when I discovered that Regorafenib wasn’t going to be given to Sam and that someone has decided to put a value on his life. Sam has an extremely rare cancer, at any given time there are only a very small number of GIST patients that need Regorafenib and the cost of treating them all is actually quite low. The NHS has an annual budget of around £100Billion but last year it cost them just over £1Million to treat everyone with Wild-Type GIST using this vital drug, Regorafenib.  Many young people like Sam that have this disease have simply been abandoned.”

Last month the Waller family were watching the news on TV when they saw an interview with fellow GIST sufferer Jemma Peacock, a young mother from West Sussex who was reaching out and asking for 100,000 signatures for an online petition to reinstate the drug.

Sam said: “Seeing Jemma being interviewed made me realise I wasn’t alone and that there was a chance of getting the decision overturned.  I’ve since learnt that there has been a huge public outcry about this decision with many celebrities tweeting support and urging their followers to sign the petition.  The #100000voices campaign has really taken off and already has well over 10,000 signatures.  The level of support has been truly amazing and has really given me hope that I will get the chance to live long enough to see my little boys grow up.”

Sam is a plasterer and his illness has made it hard to continue working as the job requires so much strength:

“I’ve had to cut the hours down to around 3 days a week but I’m determined to continue to work for as long as possible and for us as a family to live as normal a life as we can.  There have been a couple of occasions when I’ve had to take long periods off work, such as earlier last year when I had a partial gastrectomy at the Royal Marsden Hospital in Chelsea.   That was a difficult time and I began worrying about my bank balance as well as my health.  I’m self-employed so if I don’t work I don’t earn!  What I really like about the #100000Voices campaign is that we aren’t asking anyone for financial support, we just want people to take less than a minute to sign the online petition so the matter can be debated in parliament”

Since finding out about the petition Michelle has spent every possible hour helping to spread the word:

“I work for BT and everyone at work has been brilliant by signing the petition and telling their friends to do the same.  People are using Facebook and Twitter to publicise #100000Voices and Jemma Peacock has written about Sam on her website so we have somewhere people can visit to learn more about Sam and GIST itself.  As a GIST sufferer Sam felt desperately alone but having teamed up with Jemma and all the other ‘GISTers’ in the UK we feel so much stronger. We are determined to get this vital drug reinstated”

To read more about GIST or to sign the petition please visit where there is also more information about Sam Waller, his family and his ongoing battle with cancer.

Download the Sam Waller PRESS RELEASE 060315



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