Oncologist Dr Ramesh Balusi on why Regorafenib must be available for Wild Type GIST and it’s incorrect categorisation on the Cancer Drug Fund list. In reaction to an interview by Sam and Michelle Waller on BBC Radio Sussex.
From desperate times to a feeling of optimism in several weeks, literally one extreme to another.
This website launched on St Valentine’s Day, after a friend appealed for help on Facebook. A stranger, who I am still yet to meet, volunteered the services of his company, BN:Coded, and his own personal time to build this website. It was to be my online home, a hub for all things to do with my plight and most importantly a place to direct social media so that people can find out more.
Through it, I have met other GISTers, like Sam Waller, I have been able to push the #100000voices campaign and I have had a place to direct the media when sending out press releases. I have been able to say thank you to some of the amazing friends and strangers that have helped. With the campaign gathering momentum I have not been able to do as much acknowledging as I would have liked, but you all know who you are and if you have signed and shared the petition you have all played and important role.
As I’ve said before this is a rare cancer, so for comparatively few to gain the support of so many is humbling. We are only half way, so we need to do the same again before the end of the month. The momentum might be tough to continue but I am determined to get Regorafenib reinstated as an option for GIST sufferers. We ‘GISTers’ cannot do it without your help, so keep spreading the campaign as far and wide as you can and as often as you can.
We must focus on the positive and that is we’ve now had over 50,000 signatures on the petition – in a word: BOOOM!
GIST Support UK describe themselves as the club no-one wants to join. They’re right. One of the hardest things with such a rare form of cancer is the feeling of being alone. GIST Support UK does a great job of joining people together in similar situations, but you still have moments feeling solitary and isolated.
Over the last month with the campaign to reinstate Regorafenib I have been amazed and humbled by the support of everyone, friends and strangers. My tweets, posts and messages cannot ever truly pass on my gratitude to everyone involved and everyone who has signed the petition. I know I am not alone and I cannot stress enough that this campaign will affect other people if we can get the decision reversed. These are young people: Mums, Dads, Sisters and Brothers, and we are all battling GIST, we shouldn’t also be battling the NHS Cancer Drug Fund for precious extra quality time with our families. As you will have read in the local press, all I want is to see my two daughters grow up.
Last week I received an email from a mum of two, whose husband has been fighting GIST for the last four-and-a-half years. Sam Waller is from a nearby town, East Grinstead in Sussex. He has two boys, Joseph and Henry, and I am delighted that we are combining our efforts to maximise the exposure of this campaign. Other GISTers, as we call ourselves, are also doing their bit on social media, look out for the #100000voices on Twitter and Facebook and be sure to interact with it, it really does help.
If you would like to find out more about Sam please read the older press release on this site by clicking here.
Follow his wife @WallerMich on Twitter here.
Here’s a plea from one of Sam’s friends on Facebook, it’s worth a watch:
Although this website focuses on the plight of Jemma Peacock, there are a number of other people with GIST that will be affected by the decision to remove Regorafenib from the Cancer Drug Fund. Thus GIST Support UK have launched a major campaign to help raise the 100,000 signatures needed to have the decision discussed in parliament. You can join the likes of Russell Brand who recently showed his support for the campaign by using #100000voices on Twitter and any of your other social media posts.
Richard Bassett, 27, pictured above was featured on the BBC’s Look East on the same day as Jemma was featured on BBC’s South Today. His girlfriend, who set up the online petition, also took to the radio and was interviewed by BBC Northampton.
The case of Vicky Rockingham, 43, has also been widely published; most recently by the Mail on Sunday with an article written by Stephen Adams which documented the bizarre situation that Vicky finds herself in. Read the full article online here.
As we enter March with over 9000 signatures the deadline of the end of the month is looming and we really do need #100000voices to try and overturn the decision. Please sign the petition and share it as often as you can, however you can.
Over the last few days the local newspapers have shown their support by helping to raise the awareness for the petition to reinstate Regorafenib.
The South Downs edition of the West Sussex County Times dedicated the front page to the campaign under the headline ‘Mother’s battle for cancer drugs’. The story continued over the page with further reporting by James Oxenham on the withdrawal of the life-prolonging drug and Jemma’s plight. Read the full article online here.
Not to be outdone, The Argus, dedicated a double-page centrefold to the campaign by Health Reporter Siobhan Ryan. The headline story ‘I want to be able to see my girls grow up’ was surrounded with related articles and referenced to on the front page. Read the full article online here.
The Sussex Herald series of newspapers also picked up on the story with Faye Tate writing the article ‘Mum’s petition to get cancer drug reinstated’. Read the full article online here.
The call to action in print has been reflected in signatures and today the petition reached over 7000 signatures.