Help save a fellow PHer!
Discussion
So I am going to keep this fairly short and to the point..
Firstly I am an big follower of PH (although you may comment on my lack of posts..). I must spend more time reading articles on PH than working, and loved attending Sunday Services!
However, I suffer from a rare form of cancer – wild-type GIST (Gastrointestinal Stromal Tumour) which kind of hampers things.. I am only 27!
As you may have read in the news, the government has recently cut drugs from the Cancer Drugs Fund, one of them being Regorafenib which is a drug I will need once the current drug I take (to keep things stable) stops working. I (along with maybe only 50 others in the country as the condition is so rare) have been left very confused, as the drug has been proven to be clinically effective. As there are so few of us we are finding it difficult to raise the number of signatures needed for it to be discussed in parliament (100,000).
So in effect, their decision will stop me doing what I love best - reading PH, driving my S2000 and ogling supercars!
I would be very grateful if any of you could sign the petition, and share it on your facebook/twitter feeds to help us gain the voice we need!
Here is the petition:
http://epetitions.direct.gov.uk/petitions/73911
Thank you all!
Richard
Ps I should have probably posted this in the Health forum..
Firstly I am an big follower of PH (although you may comment on my lack of posts..). I must spend more time reading articles on PH than working, and loved attending Sunday Services!
However, I suffer from a rare form of cancer – wild-type GIST (Gastrointestinal Stromal Tumour) which kind of hampers things.. I am only 27!
As you may have read in the news, the government has recently cut drugs from the Cancer Drugs Fund, one of them being Regorafenib which is a drug I will need once the current drug I take (to keep things stable) stops working. I (along with maybe only 50 others in the country as the condition is so rare) have been left very confused, as the drug has been proven to be clinically effective. As there are so few of us we are finding it difficult to raise the number of signatures needed for it to be discussed in parliament (100,000).
So in effect, their decision will stop me doing what I love best - reading PH, driving my S2000 and ogling supercars!
I would be very grateful if any of you could sign the petition, and share it on your facebook/twitter feeds to help us gain the voice we need!
Here is the petition:
http://epetitions.direct.gov.uk/petitions/73911
Thank you all!
Richard
Ps I should have probably posted this in the Health forum..
Thank you all, very kind!! I will certainly keep you updated on how it goes.
Have you considered alternative funding means for the drug, such as setting up a charity if there isn't one already?
There is a small charity set up called PAWS-GIST which has set up a clinic to help improve treatment options for us, though drugs are so expensive we would never be able to raise enough money!
http://www.gistsupportuk.com/paediatric_paws.htm
We have been contacting local MPs as well though very standard responses so far..
Ps how do you add a quote in a box? Always wondered this!
Have you considered alternative funding means for the drug, such as setting up a charity if there isn't one already?
There is a small charity set up called PAWS-GIST which has set up a clinic to help improve treatment options for us, though drugs are so expensive we would never be able to raise enough money!
http://www.gistsupportuk.com/paediatric_paws.htm
We have been contacting local MPs as well though very standard responses so far..
Ps how do you add a quote in a box? Always wondered this!
Or lobbying Bayer?
I think Bayer are putting in an objection though I am not too sure of the details,
Each cycle of 84 40mg tablets costs £3744 net.
I thought it was around this mark, though when you consider there are so few of us the cost is (in the grand scheme of things) insignificant. We have a double edged sword as well here, if the government cuts the drug, drugs companies will not want to fund R&D into new drugs..
Thank you all again!
I think Bayer are putting in an objection though I am not too sure of the details,
Each cycle of 84 40mg tablets costs £3744 net.
I thought it was around this mark, though when you consider there are so few of us the cost is (in the grand scheme of things) insignificant. We have a double edged sword as well here, if the government cuts the drug, drugs companies will not want to fund R&D into new drugs..
Thank you all again!
I thought I would share a piece the BBC south did on a fellow patient - Jemma, it is quite moving!
https://www.facebook.com/video.php?v=7884130545826...
https://www.facebook.com/video.php?v=7884130545826...
Cliff that is really encouraging to hear! Regorafenib never even got NICE approval because the patient numbers are so few! A very flawed system!
Really overwhelmed by all your support! Echo that if you not receive an email it will have gone to your junk mail - the petition site also had "technical errors" last week. Conveniently it meant a lot of people who signed did not receive an email! It is supposed to have been fixed now..
Really overwhelmed by all your support! Echo that if you not receive an email it will have gone to your junk mail - the petition site also had "technical errors" last week. Conveniently it meant a lot of people who signed did not receive an email! It is supposed to have been fixed now..
||I dont think posting it anywhere else would have had the right effect Richard
signed and hope you get the result WE want||
Thanks - there certainly is a really great community on here! We have today made 5,000 signatures with all of your help!!
http://epetitions.direct.gov.uk/petitions/73911
signed and hope you get the result WE want||
Thanks - there certainly is a really great community on here! We have today made 5,000 signatures with all of your help!!
http://epetitions.direct.gov.uk/petitions/73911
morgs_ said:
If you're on a PC, click on the button the arrow is pointing at and voila! If you're quoting a post that already has a quote in it, click the button to the right and it will quote everything, rather than just the last poster's comment.
Also signed.
Snubs said:
Signed. I was in a not too dissimilar position when I was 24 with cancer (non-hodgkins lymphoma). I needed Rituximab but it wasn't allowed by NICE. Fortunately for me my consultant's attitude was 'screw those guys, you can have it anyway'. What a champion, and i never saw him again so never go a chance to thank him.
All the best.
Sounds like a top consultant! I hope it is all still working out ok All the best.
. The drug Regorafenib was not passed through NICE either simply because the patient numbers are so few.. Flawed logic!So we have now reached 7460 and started a new e-campaign to help us get the signatures and hopefully go viral!
If you go to https://www.facebook.com/GISTSupportUK to share & like this post we would really appreciate this. Also If you have twitter, please visit https://twitter.com/GISTSupportUK to RT & favourite (I only joined twitter a few days ago so quite new to it..)
We now have #100000voices for our hashtag campaign name
Really appreciate all of your help on this!
and started a new e-campaign to help us get the signatures and hopefully go viral!If you go to https://www.facebook.com/GISTSupportUK to share & like this post we would really appreciate this. Also If you have twitter, please visit https://twitter.com/GISTSupportUK to RT & favourite (I only joined twitter a few days ago so quite new to it..)
We now have #100000voices for our hashtag campaign name
Really appreciate all of your help on this!
ChickenvanGuy said:
Signed.
Seems like a tiny gesture given what you're facing, but hope it helps spread the word.
Really appreciated! We are getting lots of support now, Daily Mail this morning:Seems like a tiny gesture given what you're facing, but hope it helps spread the word.
http://www.dailymail.co.uk/news/article-2973967/Th...
RobinBanks said:
Looks like the Mail even spoke to you!
I got a few friends to sign at a party last night. Hopefully something good will come of it!
Cheers! They did indeed which was great that they are taking an interest! Russell Brand also re-tweeted the petition this morning which really pushed up the signatures as he has 9.2million followers! I got a few friends to sign at a party last night. Hopefully something good will come of it!
essayer said:
This appeared on my Facebook timeline this morning.. Up to 33k now! Good luck and keep pushing!
Fantastic we have had an amazing weekend and got more signatures in the last 24 hours than the last month!We have started a new campaign called #100000voices and if any of you fancy helping out please post a photo of yourself with an piece of card with a message similar to "I am one of #100000voices". I have put an example below. Please then post/share to your facebook/twitter with the link to the petition bit.ly/100000voices
Bonus points for having your car on the background
if you also tag GIST Support UK in the post it will come up on the charity page and hopefully we will make a collage.Thank you again for all your help!!
Thanks all again for your signatures and kind words!
A quick update - we are now at 80,000 signatures! Doing fantastically well at the moment!
Earlier in the petition a lot of people were not receiving the email you needed to confirm your signature. After much badgering they agreed to reinstate these on the petition admitting "technical errors". I thought there may be a few hundred signatures at most. Transpires it was 17,233 signatures!! These would have gone unheard had people not contacted us about not receiving an email. A copy of the response my girlfriend received below!
Ms Janes,
In response to your questions I can confirm that any issues relating to the validation of signatures have been resolved.
I can also confirm that the signatures have all been validated and added to the e-Petitions site, and that the rapid increase, and subsequent decrease of roughly 17,000 signatures was a test by our site administrators to see whether the system would accept the signatures added without a validation email having been sent. This is why you and others saw the number of signatures increase and then decrease in a short period of time this morning.
The number of signatures that were verified this morning was 17,223, and these have been validated and are visible on the petitions site.
Kind Regards,
Parliamentary Support Officer
Office of the Leader of the House of Commons
A quick update - we are now at 80,000 signatures! Doing fantastically well at the moment!
Earlier in the petition a lot of people were not receiving the email you needed to confirm your signature. After much badgering they agreed to reinstate these on the petition admitting "technical errors". I thought there may be a few hundred signatures at most. Transpires it was 17,233 signatures!! These would have gone unheard had people not contacted us about not receiving an email. A copy of the response my girlfriend received below!
Ms Janes,
In response to your questions I can confirm that any issues relating to the validation of signatures have been resolved.
I can also confirm that the signatures have all been validated and added to the e-Petitions site, and that the rapid increase, and subsequent decrease of roughly 17,000 signatures was a test by our site administrators to see whether the system would accept the signatures added without a validation email having been sent. This is why you and others saw the number of signatures increase and then decrease in a short period of time this morning.
The number of signatures that were verified this morning was 17,223, and these have been validated and are visible on the petitions site.
Kind Regards,
Parliamentary Support Officer
Office of the Leader of the House of Commons
rfoster said:
Hi Richard, all signed. A good friend of mine also suffers from the same form of cancer, Sam Waller - my family have been actively promoting this petition over the last 10 days or so, along with many families in our local village.
My thoughts are with you all. I hope that the government can do something to help.
Fantastic thank you, there certainly is a huge amount support coming from your way My thoughts are with you all. I hope that the government can do something to help.
We have been in touch Sam and his wife and will hopefully meet at some point (there are only a few of us in the country!). Gassing Station | The Lounge | Top of Page | What's New | My Stuff