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Contact: Laura – email@example.com
PETITION SUCCESS FOR YOUNG YORKSHIRE MUM WITH RARE CANCER!
Bridlington’s Laura Todd helps collect 100,000 signatures on an online petition to force Parliamentary debate to reinstate funding for her “last-resort” cancer drug Regorafenib.
Laura Todd is just 31. She lives in Bridlington with fiancée Christopher and their lovely daughter Amber. In 2006 she was diagnosed with Gastrointestinal Stromal Tumour (GIST), a rare cancer found in the digestive system. She’d been unwell for a long time when doctors finally discovered a large tumour in her small intestine which had to be removed. She was told in 2012 that she had metastasis in her liver
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 Laura learnt that this will no longer be available to her 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.”
Laura was devastated when she first learnt the drug wasn’t going to be available and immediately went into action. Via Twitter she made contact with Jemma Peacock, another GIST patient who lives in Storrington, West Sussex. Jemma was campaigning online to raise 100,000 signatures on a Government e-petition in an attampt to force a Parliamentary debate to reinstate funding for the Regorafenib drug.
“I’d known Jemma was spearheading the #100000voices campaign via her website and on Twitter” said Laura “I could see that the more of us that helped with the campaign the better the chance of success. I’m naturally quite a private person, especially where my illness is concerned, but I felt inspired by Jemma’s actions and contacted her to ask how I could help. Jemma and her team certainly didn’t hang around and the next day I had a page of my own on her website (jemmapeacock.org/laura) and she’d advised me on how to get some local media exposure and how my friends and family could also help. The campaign has been something quite amazing and it’s been overwhelming to see a community of warm-hearted and generous ordinary people doing so much to help those of us who need it.”
Laura’s GIST cancer isn’t her only medical problem:
“My daughter Amber has a similar medical condition to Harvey, Katie Price’s son, and requires a huge amount of care and special medication. Amber’s blind in one eye and has quite severely impaired vision in the other. She has to have injections every night and we carry emergency medical supplies wherever we go. Luckily my fiancee Christopher and other family friends have helped me with Amber so I have been able to really throw myself into campaigning. I’ve been in all the local newspapers and have already been on a couple of local radio stations too. The response has been humbling and overwhelming and I’m now so glad that I’m involved in something that could help extend my life and the lives of other GIST patients in the UK. We secured the last 50,000 signatures in just over a week and at one point 1000 people were signing the petition per hour! I’ve had countless messages of support from strangers but it felt like one enormous family on Twitter as we watched the numbers on the petition climb towards the 100,000 we needed on Tuesday afternoon. I was in tears when we finally reached the magical number and for a while Twitter seemed full of messages about the #100000voices campaign and very little else. I think we nearly broke the internet! Dozens of celebrities including Joan Collins OBE, Irvine Welsh, Omid Djalili, Vernon Kay and singer Edwyn Collins had all supported the campaign and some even sent me personal messages which was mindblowing for a young mum from Bridlington!”
Laura acknowledges that despite collecting the signatures required to force a debate there is much hard work ahead.
“Jemma Peacock was in touch almost as soon as we had our 100,000th signature” explained Laura “and was outlining how we now have to work on lobbying MPs to ensure we have enough support to win the debate in Parliament. We’re already putting together some information packs which we plan on sending to every single MP in the country. I’ve learnt from Sam Waller, another GIST patient in the team, that his MP Sir Nicholas Soames had not only signed the petition but had also written to Jeremy Hunt MP, the Health Secretary, and asked him to reconsider the decision to stop funding this drug that we so desperately need access to.”
“I’d like to ask everyone who has supported me and the other GIST patients to stay with us for this next stage of the campaign. Without their help we could never have forced this debate but we will need them along the way to help us lobby the MPs to make sure we get the correct result. This drug could give researchers the time to find a cure for GIST cancer. I dream of seeing my daughter Amber walk up the aisle one day and being able to overcome her own disabilities and live as an independent adult. This is my motivation for continuing the battle – who wouldn’t keep fighting and campaigning in my position?”
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.”