Regorafenib Reinstated

I am absolutely delighted and relieved to report that Regorafenib is now officially back on the cancer drugs fund for GIST patients in England.

In a statement released today the NHS said:

In December, the national CDF Panel took a careful look at how we ensure the drugs available offer the best clinical benefit, getting the most for patients from every pound. Following this prioritisation process, drug manufacturers had the opportunity to request that the Cancer Programme of Care Board review their case. The review looked at whether the Standard Operating Procedures, on which we publicly consulted, were fully followed.  It did not look at the medical decisions made by doctors on the national CDF Panel.

The Board referred five of these back to the CDF panel to review at the last panel meeting, which were also considered alongside new applications for inclusion in the CDF in the normal way.

After careful consideration, one of the five drug indications that were looked at again will remain on the CDF (Regorafenib).

All I can say is thank you all for your support, efforts and kind words, it wasn’t in vain… oh and of course one last BOOOM!

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Fortunately Not Everything Is Progressing!

Now that the dust has settled on the amazing achievement of raising 100,000 signatures on the e-petition to reinstate Regorafenib it’s time to look at what the next course of action should be.

Fortunately us “GISTers” can rely on the amazing people at GIST Support UK to act on our behalf. They led and co-ordinated the #100000voices campaign superbly and it comes as no surprise to me they are already working hard on “phase 2″.

I’m thrilled to confirm that both GIST Support UK and Sarcoma UK have added their weight to an appeal against the removal of Regorafenib from the Cancer Drug Fund (CDF). The appeal was initiated jointly by Bayer (who manufacture Regorafenib) and senior GIST clinicians. While we are waiting for the outcome of the appeal Regoragenib will remain on the CDF list, which is great news. Phew!

Now GIST Support UK’s main focus is to encourage local supporters to ask candidates at the general election to pledge their support for the reinstatement of Regorafenib. I’ve already made contact with my local MP, Nick Herbert, and I have a meeting with him in the coming days to try and ensure that we have his backing. Let’s hope it goes as well as Michelle Waller’s recent meeting with Nicholas Soames MP where he gave GIST patients his full support. Then he immediately contacted the Health Secretary, Jeremy Hunt, asking him to reconsider his decision to remove Regorafenib from the CDF list.

It’s a huge relief for me to have such a well-connected charity as GIST Support UK looking after my interests as the process moves forward. It was encouraging to hear Jayne Bressington, Vice Chair at GIST Support UK, speaking so well in this radio interview earlier this week. I know how hard Jayne works for us on the medical side of things and her know-how and tenacity will be real assets for the campaign as it progresses.

I’m looking forward to taking more of a back seat as things move forward and I urge anyone reading this to bookmark the GIST Support UK website where all the latest news and updates will be posted. Please also “like and “share” news from their excellent Facebook page here. Twitter users will no doubt be pleased to hear that I won’t be bombarding their timeline quite as much in the future, but I’d like to take this opportunity to urge all of my followers to now follow and support Jayne and the others at GIST Support UK by following and retweeting the @GISTSupportUK Twitter account to continue spreading the good word. Social media played a vital role in us reaching the goal of 100,000 signatures and I have no doubt that it will have an equally important part to play as the appeal process and any Parliamentary debate progresses.

Finally, I have some good news about something that hasn’t progressed! Anyone that knows me will know how anxious I get leading up to getting my scan results. Earlier this week, after another sleepless night, I nervously went to my local specialist to review my latest scan. After the petition result I was worried that I’d used up all my luck. Words cannot express how thrilled I was to discover that my GIST cancer is stable and hasn’t grown at all. As the title of this blog says… fortunately, not everything is progressing!

Jemma xx

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Michelle Waller meets Rt Hon Sir Nicholas Soames

Rt Hon Sir Nicholas Soames meets Michelle Waller, wife of Sam

Rt Hon Sir Nicholas Soames meets Michelle Waller, wife of Sam

This evening I met with MP Nicholas Soames at his surgery in Haywards Heath. It was good to finally meet him in person after he spoke so eloquently on BBC Radio Sussex for our campaign. Nicholas congratulated me on the success of gaining 100,000 voices and said he is fully prepared to support me and Sam going forward.

Nicholas informed me that with the House soon closing down due to the general election there will not be time to discuss the issue in the House of Commons before the general election. However, the Secretary of Health will still be responding to questions during this time so Nicholas has emailed him regarding the issue and is awaiting a response. He will also seek the opinion of Minesh Patel (Clinical Chair of Horsham and Mid-Sussex Clinical Commissioning Group, and also the Vice Chair of the West Sussex Health and Wellbeing Board) in a meeting scheduled for next week.

Nicholas asked me to email him over some further information so I have sent him the opinion of Professor Ian Judson (Head of Sarcoma Unit and Professor of Cancer Pharmacology at The Royal Marsden) and the BBC Radio Sussex interview with Dr Ramesh Balusi (leading Gist specialist). I have just seen he tweeted soon after I left “So pleased to meet amazing Michelle Waller about her campaign to secure drug for her brave husband Sam.” Nicholas said he will be back in contact with me soon – I will keep you posted.

Michelle x

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#100000voices – the story so far

BooomI was about 1000 signatures late before I discovered that an epetition had been set up by the girlfriend of a fellow GIST Sufferer. My campaign journey began on the 11th February with an interview on BBC South Today. Good, close friends rallied around me setting up fund-raising pages and spreading the word on Social Media. This was a strange time. While I never kept my cancer a secret, I’m not the sort of person to make it a topic of conversation at the school gate! All of a sudden though, people were talking. If I’m honest, this took a bit of getting used to, especially as I still do not want my children to know the severity of the situation.

Soon after my South Today interview, friends and strangers created this website – my little corner and online home. Like I say on my homepage, I didn’t think I’d ever need a website, but then I didn’t think I’d ever need to find 100,000 people to campaign for a last-resort drug to treat my cancer either. But here it is, a hub for the campaign and all involved. Early on, I was only thinking that we might get to 10,000 signatures in the time we had available.

Things started gathering pace when I hit the headlines in print and made my debut on the radio. The momentum continued to build as I met a number of other GISTers at TMW Unlimited for a photo shoot. The resulting images are brilliant and can be seen on the Gallery page under ‘TMW’. Armed with these, and other banners of my own, we hit social media, and we hit it hard… I’ve never really been on Twitter but I’ve had to learn it quickly as I’ve been getting as many mentions as some celebrities. We have certainly had our fair share of celebrity support on Twitter. Irvine Welsh was one of my early champions and he really added kudos to what we were saying with his quote “It’s obscene beyond expression how people can have the arrogance to put a price on young lives.” He was later joined by a long list of celebrities,each sharing the campaign among their thousands of supporters. With other ‘GISTers’ doing the same the signatures on the petition really started to climb.

Then Michelle Waller contacted me via the website. Her husband Sam has GIST and is in a similar position. We gave them both a home on the site, so that they had somewhere to direct traffic and media interest. They are another Sussex family who have added massively to the campaign’s awareness, and with their help on social media the signatures continued to grow. They too hit the papers, radio and television.

Among those sharing the campaign with their own followers and supporters were Russell Brand, Leigh Francis, Joan Collins, Carlton Palmer, Ian Royce, Boy George, Omid Djalili, Larry Lamb, Paddy McGuinness, Vernon Kay, Ian Rankin, Arrested Development, Ruby Turner, Edwyn Collins, Dawn French, Les Dennis, Bobby Ball, Matthew Wright, Eddi Reader, Chesney Hawkes, Davina McCall, Carlton Palmer, Matt Le Tissier and Zoe Ball to name just some.

Michelle, Sam and I met up for the first time at a dance event to raise awareness for the campaign, I’ve been meaning to write a blog about it ever since but have never quite got round to it as things got very busy very quickly. I might still if things calm down! It was a great evening – everyone enjoyed themselves and, whilst the story behind why we were dancing is a far from happy one, the atmosphere on the evening was poignant but positive and struck the perfect balance. Plus it was wonderful for us all to finally get together too.

I also learned about Laura Todd’s story, and she joined this online hub of people with rare cancer that will be affected by the removal of regorafenib from the Cancer Drugs Fund. Being a young Yorkshire mum she managed to help the campaign reach an entirely new demographic.

So here we are with the staggering support of #100000voices. Sadly that is not the end, just the first chapter in the campaign. We still do not know what the future holds but with an overwhelming 100,000 people on the side of us ‘GISTers’, I am determined to get the drug reinstated for us all. We all know it should be. Even the GIST expert, Dr Ramesh Balusi, said it needed to be – not only to allow us to spend valuable time with our loved ones, but also to buy us a window of opportunity that may enable a cure to be found.

I will continue to keep you updated here, but from a humble mum of two from Sussex, thank you. Words can never actually express the incredible gratitude I feel towards everyone who has signed, supported or shared this campaign. It really is beyond words, so thank you will have to do.

Jemma xx

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Meet Laura Todd

Read Laura’s Press Release here.

Listen to Laura on Yorkshire Coast Radio here.

At just 31, Laura’s the same age as me. Another thing we have in common is that we both have “Wild Type GIST” the incurable cancer of the digestive system.  It’s so rare that hardly anyone’s heard of it until recently and the amazing efforts of all involved in the #100000voices campaign.

Laura Todd with her family

Laura Todd with her family

Laura was initially diagnosed in 2006 after being poorly for a long time. She had a large tumor in her small intestine which had to be removed. She was told in 2012 that she had metastases in her liver.  She’s been through so much for someone so young and I know how isolated you can feel having the rarest form of cancer you can get.

Laura’s engaged to be married to Christopher in August 2015 and she has a beautiful daughter called Amber who’s 12.  Don’t they look great together?  What a lovely family!  Laura is originally from York but now lives in Bridlington or “Sunny Brid” as it’s known.

Laura contacted me through Twitter and said she’d like to get involved in promoting the petition to get the drug Regorafenib reinstated onto the Cancer Drugs Fund list.  We both know that this drug is a last resort chance for us both to live considerably longer so we’ve got a LOT of motivation to get this thing done!

Having GIST is plenty to deal with but Laura has even more on her plate.  Amber was born with a similar medical condition to Harvey, Katie Prices’ son.  She requires medication throughout the day, an injection at night and Laura has to carry emergency medicines everywhere they go.  Amber is partially sighted in one eye and completely blind in the other and I cannot imagine how tough it must be for Laura to have to cope with her GIST on top of looking after Amber.  What an amazing and inspirational woman.

I’m delighted to give Laura all the help and support she needs to help her spread the word on behalf of all us “GISTers” in the UK.  The support starts right here with this webpage where we’ll update everyone on what Laura’s been up to and how she’s getting along.  I know how hard she’s already working on Twitter (@LauraT9118) and Facebook to spread the good word and I’ve asked my team to help Laura to get some extra press coverage and radio interviews lined up.

Myself and Sam Waller are both based in Sussex so, in a way, Laura’s unwittingly opened up our Northern Division.  I just hope she knows what she’s let herself in for!

Jemma xx

 

Older press releases:
Press Release – 15 March 2015: Young Yorkshire Mum’s Campaign for 100,000 Petition Signatures.

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