Press Release – 20 March 2015

For immediate release

Contact:  Michelle Waller – 01342 313994 / 07867 498260

Twitter:  @WallerMich  @PeacockJemma

Website: www.jemmapeacock.org/sam

 

PETITION SUCCESS FOR YOUNG SUSSEX DAD WITH RARE CANCER

East Grinstead’s Sam Waller helps collect 100,000 signatures on an online petition to force Parliamentary debate to reinstate funding for his “last-resort” cancer drug Regorafenib.

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 without the disease progressing, providing both time with their families and for research into other solutions to continue.

One of these vital, “last resort” life-enhancing 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 & his wife Michelle were naturally heartbroken when they learnt the drug wasn’t going to be available and immediately went into action.  The East Grinstead couple contacted Jemma Peacock, also from West Sussex, who was campaigning online to raise 100,000 signatures on a Government e-petition in an attempt to force a Parliamentary debate to reinstate funding for the Regorafenib drug.

“We saw Jemma was leading the #100000voices campaign via her website and on Twitter” said Sam, “Michelle contacted Jemma to ask how we could help.  Within hours we had a page on Jemma’s website (Jemmapeacock.org/Sam) and she’d advised us on how to get some local media exposure and how our friends could also get involved.  The campaign has been something special and has brought together a community of kind-hearted ordinary people all doing their best to help those of us who need it.  For a while it did seem that 100,000 signatures were too much to ask for but we never once thought about giving up.  This certainly paid off as a combination of hard work and determination coupled with local and national media exposure saw the numbers climb dramatically in the last couple of weeks.  I’m told that at one stage someone was signing the petition every four seconds as celebrities joined us in asking their followers to sign and spread the word.  On Tuesday we all watched the petition site all day as we closed in on the magical number and it was overwhelming to witness the outpouring of kind messages on Twitter as we finally reached our target late in the afternoon”.

Michelle had helped to organise a large group of their friends and family to add considerable manpower to the campaign.

“I can’t thank those who have helped us enough” she said, “so many local people have been helping that it’s impossible to thank them individually.  They each played a vital role and without them we could not have made such a loud noise online and attracted so much additional support from strangers.  What we’ve all achieved is something quite special.  GIST cancer is very rare indeed, so rare that last year only 29 people were actually administered the drug we are campaigning to reinstate.  GIST patients felt isolated before but now, thanks to this campaign, Sam can see that there is an enormous amount of support for him and all the other sufferers in the UK.”

“We’re obviously elated to have #100000voices speaking out for us”, she continued, “and we’ll need each and every one of them behind us as we move forward towards the Parliamentary debate.  We’ve already started planning that stage of the campaign with Jemma Peacock and other GIST patients and I have a meeting shortly with Sir Nicholas Soames MP to see how he can help us.  He’s already spoken of his support for us and in a recent interview he announced that he had signed the petition himself and had also written to the Health Secretary, Jeremy Hunt MP, to ask him to reconsider his decision to remove Regorafenib from the Cancer Drugs Fund list.  Several other MPs have also pledged their support but we intend to ensure that every MP in the UK has all the facts and medical evidence that support the argument that it was completely wrong and inhumane to stop funding this drug in the first place”.

Jemma Peacock is also delighted about the petition result but is already focusing on the political campaign ahead and said:

“There is clinical evidence to show that Regorafenib is highly effective in halting the progression of GIST cancers. There are so few of us GIST patients requiring Regorafenib the total cost to treat us all is actually relatively small. In fact, I find it impossible to imagine any MP voting against reinstating it to the Cancer Drugs Fund list because the benefits far outweigh the costs. Despite being extremely confident that Parliament will do the right thing we won’t be taking anything for granted. We will collectively be doing everything we can to ensure a high turnout for the debate. After all, this is about giving people quality time with their loved ones and I don’t think anyone should be putting a price on that”.

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