A mum with an extremely rare form of incurable cancer is urging the government and NHS to reconsider withdrawing a drug which “could extend her life by years.”
Laura Todd, 31, who was diagnosed with Wild Type Gastrointestinal Stromal Tumour (GIST) when she was 22, said she wants to grow old enough to see her young daughter get married.
Currently there is no cure for GIST and it cannot be operated on.
Now the drug which is likely to prolong Laura’s life may soon be taken off the NHS.
“It’s not about me” said Laura, “I don’t want people to pity me. But I need to be there for my daughter who needs a huge amount of care and special medication.”
But Laura’s dreams of caring for and watching 12-year-old Amber grow up may fall through, unless the Cancer Drug Fund reconsiders discontinuing the £1,123 per-week drug from the NHS. It comes after they said it “represented insufficient value” in an official report.
The devastating news that the one drug which could prolong her life was to be withdrawn, prompted Laura to join two other young mums with GIST in their campaign to encourage people to sign a government petition.
The now successful campaign for 100,000 petition signatures is spreading on Twitter using the hashtag #1000000voices - It was organised by fellow GIST patient and mother of two, Jemma Mitchel, of West Sussex.
Laura, who is also engaged to be married to her fiance Christoper in August, added: “I’m not one for complaining and we were doing OK but the news that Regorafenib would not be available to me was a huge shock and for a time I felt helpless.
“Then I found out about the #100000voices campaign to get the decision debated in parliament. Up until now nobody really knew I was poorly. Now I feel like I don’t have a great deal of options other than to talk about it.
“I’m in a really hard position because I need to get these signatures, or I will lose something that is going to keep me alive.”
Although rare, the cancer still affects around 900 people a year, but research has suggested Regorafenib can slow the cancer’s progression by 73 per cent.
“Wild Type GIST cancer is not a bowel cancer - it’s a digestive system cancer”, Laura added, “It’s often described as the rarest of rare cancers.
“Regorafenib shows really good results with young people in particular.”
Following her diagnosis in 2006 Laura underwent an operation to have a tumour in her intestine removed. But six years later doctors told her the cancer had spread to her liver and could not be operated on.
Despite there being no cure for GIST, Laura remains optimistic that Regorafenib may give her a fighting chance and at very least, give her more time to spend with her family.
She said: “Even if the drug gives me just one more year of life, that could be the year they find the cure for GIST.”
Now Laura and the #100000voices campaign have found themselves at the centre of national attention, with celebrities such as Russel Brand and comedian Omid Djalili getting on board to spread the word.
She added: “The deadline for the petition is 30 March 2015. This whole campaign has just snowballed. Two weeks ago we had around 20,000 signed up and reaching 100,000 felt like a fairy tale.
“We’ve had more than 50,000 people sign in the last week and at peak times over 1000 people were adding their names every hour.
“We are so close to the 100,000 now and I’m hoping the good people of Bridlington and Yorkshire will play their part in getting us over the line.”
To sign the petition visit www.jemmapeacock.org and click the ‘SIGN THE PETITION’ button on the right-hand side of the page. You can also spread the word on Twitter and Facebook using the hash tag #100000voices.
Laura added: “My biggest dream moving forward is that I’m able to live long enough to see Amber as an independent adult.
“Every person adding their voice to #100000voices petition makes that dream one step closer to reality.”