#100,000voices e-petition delivered to No. 10 Downing Street – 23 June 2015

Sincere thanks to everyone who has supported us with the call to retain regorafenib on the Cancer Drugs fund for GIST patients.

Yesterday was our appointment with No. 10 Downing Street to deliver our #100,000voices e-petition containing 103,841 signatures supporting retention of regorafenib for GIST patients in England.

We were joined by MP’s representing constituents and supporters, from around the UK at No.10 and afterwards at our meeting in The Palace of Westminster. Many thanks to everyone who has supported us throughout this campaign!

21 MP’s have signed the Early Day Motion raised by James Gray MP calling for regorafenib to remain accessible for GIST patients. Please bring this to the attention of your MP and ask them to sign (link below).


Our voices have been delivered and we hope they will continue to be heard!

We are delivering our #100,000voices petition to No. 10 Downing Steet – Please come and join us!

We are very excited to announce that we will be delivering our 100,000 voices e-petition to No. 10 Downing Street on Tuesday 23rd June 2015, 3.00 pm.

We are hoping that MP’s who have supported our campaign will be able to join us inside the gates to Downing Street along with journalists.

It will be great if you can also come along to cheer us on!  

You may like to make a day of it and visit the Houses of Parliament.  You can visit the public galleries of either House of Parliament, or the Westminster Hall Chamber, at any time when they are in session. Entry is free and does not have to be arranged in advance – use the main Cromwell Green visitor entrance to the Palace of Westminster

If your MP was helpful during the campaign please can you send them an invitation to join us by using THIS INVITATION.

We are hoping that this event will bring together senior GIST specialists in the NHS and charity sector with MPs to discuss our shared ambitions and for GIST cancer patients to have access to regorafenib via the cancer drug fund and any system that replaces it.

If you and/or your MP are able to attend, please RSVP to admin@gistsupportuk.com

Looking forward to a great day!

New NHS England Cancer Drug Fund consultation – Closing date 18th June 2015
Please respond to this public consultation on behalf of GIST Patients

The Cancer Drug Fund rules (otherwise known as the Standard Operating procedure or SOP) are currently under review and some changes are being proposed.

Having reviewed the proposed changes we are concerned that they are ambiguous and that if they are not modified will result in regorafenib failing the criteria to stay on the cancer drug fund when there is another review.

This is a public consultation, so please click on the following link and respond to the consultation questions. GIST patient, Carer, Clinician and supporter views are vital for the right decision to be made.

We have prepared some example responses in this document for you to use.

The following link will take you to the online consultation:


We are very keen to work with NHS England to find a sustainable way for rare cancer patients to access treatments.

Please ask everyone that you know to complete the online consultation questionnaire expressing their views on these changes before 18th June.

This is equally as important as when you signed our e-petition. Not doing this could potentially reverse the hard work done to get Regorafinib back on the CDF!!. 

Posted in GIST News.