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!