No Tykerb in the UK, calling all the UK Her2 people - Page 2

tricia keegan · 03-13-2009, 05:53 PM

Thanks Joe, I of course don't live in the UK but do have relatives there, one with a local recurrance presently having scans to determine if the cancer has already spread so try to keep up with the tx there.
ladies of the UK, ever thought of moving to Ireland??? I can recommend the health care and it's thirty mns flight time!
Carol H moved here for that very reason when I told her she could have tykerb for her advanced cancer, as did some nurse's beside me in the chemo ward!

janieR · 03-14-2009, 05:44 AM

Ellie I have also contacted 2 MP's today and suggested they raise this issue. My husband has also contacted Nice as he obviously is as furious as me about this.

Janie

Laurel · 03-14-2009, 10:53 AM

Fellow fighters of the United Kingdom,

I want you to know that here in the States we are following these newest rulings by NICE quite closely as the new Obama administration is implementing the lst steps toward socialized medicine in our country. A QALY is being created in the U.S. presently.

Talk radio in the States is decrying the treatment of breast cancer patients in your nation, as is conservative television. Sean Hannity of Fox News has been speaking out against the deplorable treatment of metastatic breast cancer by NICE. Sadly it is being mostly ignored on CNN and network T.V.

I feel terribly sad and fearful for all of you, and for myself who sees this coming to my country. Please do go to your media, and please contact the FOX News Network,http://www.foxnews.com/ . I believe they will give you coverage of your petition effort. If your story is big enough it will get picked up by the world. Let me know if you need me to make any calls or contacts here in the States for you. I cannot move mountains or walk on water, but I can usually talk my way into where I need to go. I certainly will do my utmost for you.

fullofbeans · 03-16-2009, 02:45 AM

I created this petition, could you let me know if you think the text is ok? and sign if you do think it is even if you are not british since there is the option to indicate your country of residence.

http://www.ipetitions.com/petition/tyverb/

webmum · 03-16-2009, 05:14 AM

Hi Fullofbeans,

Great initiative, hope it works, I signed it and sent it to all my friends.
I was lucky enough to get tykerb as part of a trial, I really hope this will work!

Best of luck,

Laurel · 03-16-2009, 06:04 AM

Fullofbeans,

I think your verbiage is fine and have sent out your petition to many friends and associates to sign and forward. I will send it off to Fox News in a moment. Hopefully they will post it on their website and perhaps even mention it on a broadcast.

We are with you! Please keep us updated on what happens next! I admire your courage in taking on the system! Way to fight the Goliaths, little David!

Laurel · 03-16-2009, 06:08 AM

Fullofbeans,

Will you post a new thread with your petition on it ? As you can see, most of the U.S. folks are staying away from this thread as it was posted originally to citizens of the U.K. I am certain you will receive many signers if you alert our members of your need.

fullofbeans · 03-16-2009, 09:36 AM

Dear All,

Thank you all for your support and your kind, constructive and intelligent comments. It is great to have that support and despite the fact that I have met just few of you personally I feel really close to you.

I think all of you can imagine what it would be like to not have access to a medicine when needed and being told that we are not worth the cost.. I certainly do not wish to ever be in that situation.

tricia keegan · 03-16-2009, 11:44 AM

Hi Fullofbeans,

I just signed and want to wish you luck with this petition.
I'll post it on the UK cancer site I visit also to gain more support.
I've already asked the founder of the site if she can help in any way by drumming up support/or using contacts she may have.

Ellie F · 03-16-2009, 12:01 PM

That's great Tricia,thanks. Been at it all day sending it to various organisations political and otherwise. Lets hope it makes a difference. Joe has also made some suggestions to drum up support and all our friends on the board I have no doubt will sign for us. Ellie

janieR · 03-16-2009, 01:14 PM

Ellie, Fullof beans and Tricia , to my surprise having contacted my local MP via email .he got straight back to me and said he would speak to the Health Minister and get back to me.and requested my address to get a written reply to me. I will believe it when I see it but one can only hope. It is a start.

tricia keegan · 03-16-2009, 01:28 PM

Thats great Janie, well done

Sometimes people power can make a difference.

Ellie F · 03-16-2009, 01:35 PM

Hi fellow campaigners. We'll shortly have all the UK covered. Would be brilliant if we could get most MP's contacted as this will really increase the pressure to get the decision changed. If we can get international support from our friends in the States as well it will be very newsworthy and maybe get it on national (and international)news.Ellie

TerriC · 03-16-2009, 03:47 PM

This petition is also on the Susan G Komen message boards(thanks Tricia!) and I signed it there. This is outrageous and makes me scared that the QALY is being discussed here in the US.

fullofbeans · 03-16-2009, 04:01 PM

Thanks everyone for your great advocacy skills you rock!

Janie great hope that it is not just a political pleasing answer. I have worked with few of them and that is how I understood that being a polititian is not just a job but a way of being, I could see them agreeing with you one moment and say the contrary to the other group later. But let's stay positive it is a great start, well done..maybe they will be more active if they know that we are gathering support.

Well done all just continue sticking the link anywhere possible better a wrong place that an missed place.. I can feel the community vibe and it is lovely.