I've just had a reporter and cameraman over from London Tonight, who are doing a story on the situation regarding dasatinib and nilotinib.
It'll be on ITV in london at 3:45pm today (just before the football). So, if you live in the area try and have a look.
For those who don't, I think this is the link to watch it online:
Current Working Link - CLICK HERE
(the previous link wasn't working)
Hopefully this can really help raise awareness for our campaign.
Jed
Hi Sandy,
Unfortunately, they mentioned that ITV's player is often down.
My brother-in-law has put my item on youtube, so you should be able to watch it there:
http://www.youtube.com/watch?v=IqDFDfOGlbs
Jed
Thank you Ali.
I heard your radio interview the other day, with my wife Bhiru, and we noted the same. It's not easy being interviewed, but you did an excellent job.
You may also be interested to hear that I've just spoken to someone at BBC London TV News, who I got in touch with via email last week, and they're also going to run this story. They'll interview me tomorrow morning, and are also hoping to speak to Jane Apperley (at Hammersmith Hospital - hopefully they can get in touch with her!).
This seems to be taking off a little.
Best wishes,
Jed
Dear Jed
I have just watched your interview on Youtube. Very well done to you for an intelligent but human interview. You came over so positvely in saying that we are not only fighting this for ourselves but each other now and in the future. I'm fighting to give my teenage son a choice should he need it. I spoke to his haematologist at length the other day about this and she said she's hardly slept for worrying about her patients. She said she's just spent 25 hours lobbying our local PCT group for the right to prescibe 2nd generation drugs. Its such a waste of time if she has to go through the whole thing again if the NICE decision remains regative and she has to argue 'Exceptional Circumstances'.
Much luck for your further media interviews
Sarah
Well done Jed,
I have just watched your interview on youtube. Having done interviews for both television & radio myself, I know how difficult it can be to get your point accross in a clear & rational way, but you suceeded on both counts.
Having just been told myself that my bone marrow has come down from 86% to 3% in the 10 weeks since changing to dasatinib, I know that these drugs really work.
Keep your chin up, the fight is not over yet.
Bob
Jed
Congratulations on an excellent interview - as a dad with two fairly young children I certainly understand the emotions you expressed. Well done for all your efforts on this. Imatinib is currently working well for me but nothing is certain and I'm determined to help fight the same battle, as you say, for all.
Richard
Jed
This was a very moving and clear appeal. It put the point so very well, this is about treatment for LIFE. I so admire you for putting across the argument that this fight is for all CMLers, and not just for individuals.
On Nilotinib my counts are coming down, and the results are excellent - and this is after 6 years of previous treatment with Glivec. The second generation treatments are really working for so many people.
Thankyou for 'fighting the fight.
Pennie
Hi Jed
I've just watched your interview, thank you for speaking up for all of us. I changed over to nilotinib about 6 months ago and its made a big difference, but not sure what will happen now.
If its ok with you I would like to email the link to friends who hopefully will pass it on and ask people to go to the government website and sign the patition.
All the best
Apryl
Thank you so much, everyone, for all your lovely comments. You're all right, we are all fighting this recommendation for each other, as well as ourselves.
Apryl, of course I don't mind you forwarding the link. The more people see it, the better.
I've just had the reporter and camera crew over from BBC London TV News. Hopefully it should go out tomorrow (at 6.30pm). I have no idea how the piece will be, but it's more public awareness for the cause.
As soon as I know any more I'll let you know.
BTW, something that really restores faith in human nature happened as a result of the London Tonight item. A woman phoned them up and left her number, offering to make a donation to help me (a complete stranger!!) pay for the drugs. Of course, I refused, and explained that the purpose of the campaign was to get NICE to change their mind. But it really was such a wonderful gesture.
Bob, that is a phenomenal response to Dasatinib! I'm very pleased for you.
You must be walking on air.
You're doing some wonderful things Jed and deserve all the praise you are getting. I myself am doing OK on Glivec - but that could change at any time. It's a fight we should all take on to our best efforts. Unfortunately, I'm still waiting for a reply from my MP from November. I did ask him not simply to pass my letter on to the DoH, who would just push the party line, but to try to actually talk to people who could make a difference to the cause. I hope he has managed to turn opinions, but we shall see.
Proud of you and Bhiru, well done again.
