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Coverage in Daily Mail (NICE)

Hello lovely people,

Earlier this week Jed sent out letters to all the national newspapers. He's just spoken to someone at the Daily Mail and they are going to print something in the letters section of tomorrow's paper. We're not sure how much information they are printing, but feel it's good news that it is being brought to the public attention. Hopefully it will be a fair representation of the issues.

Jed is currently on the phone to another journalist from a local paper so watch this space for updates.

Good to see that the response to the petition is still growing too.

All the best

Bhiru

Well Done. You 2 look very happy. Sure hope that continues.
Excellent letter.
Have emailed it straight to my MP

Assume what's in the Daily Mail is the same as the Northants paper which is totally excellent!!!Really well done and THANK YOU!!! :-)
Vickie

Thanks, both of you.

The letter in the Daily Mail is actually different to the article on the front page of the Northants Evening Telegraph, Vickie. I've included a copy of it below. It's based on an email I sent to all the nationals, modified by the paper.

Just for everyone's reference it's on page 85 of today's paper. I'm quite chuffed actually - the letter and accompanying photo take up nearly half a page. Hopefully it will help.

The letter:

"The National Institute for Health and Clinical Excellence (NICE) is denying leukaemia patients drugs which can add decades to their life expectancy. For me, this could be a matter of life or death.

On Monday November 16, NICE recommended that two drugs for chronic myeloid leukaemia (CML) would not be made available on the NHS because it wasn't cost effective.

This is completely contrary to current practice in Scotland and Wales - as well as in Europe, the U.S., Australia and many other parts of the world. It leaves English sufferers with no viable treatment options for this life-threatening condition.

These drugs have the potential to extend CML sufferers' lives by decades - perhaps doubling my own life expectancy. The relatively mild side-effects that most people experience on them mean that the patients' quality of life can remain good: they can continue working and live a full life.

I was diagnosed with CML in 2007 when I was 28 years old and was put on a drug called Imatinib, dubbed 'the magic bullet'. It made the cover of Time Magazine in 2001 when it was licensed. Sadly, it didn't work very well for me and my consultant looked for alternatives. There are many other CML patients who can't take imatinib.

The remaining options are stem cell transplantation, which is inappropriate for many (through lack of a donor, co-existing condition or age) and carries a high risk of death in the first year, or taking Dasatinib and Nilotinib – the drugs NICE won't allow. If these aren't made available on the NHS, it is very possible that I could die as a result.

Last week I met with my local MP, Vince Cable, who has agreed to help me fight this ruling, as have friends and family.

My consultant, Prof Jane Apperley, chair of the Haematology department at Imperial College, London, is very clear that NICE has made a mistake on these drugs.

I lost my mum to cervical cancer when I was 13 and my dad was diagnosed with prostate cancer last year. My brother is the only member of the family not to have been diagnosed with a cancer.

I'm only 31, recently married to a beautiful woman and we're looking to start a family. I'm also studying to become a counselling psychologist, a profession based on helping others. I could live a rich and full life, but all of that will be lost if NICE's decision leaves me to die."

It was great of you to post above, but I found a copy of yesterday's Mail in next door's re-cycling box so have the photo as well...very, very beautiful of you both and makes your letter extremely eye-catching. It is extremely fortunate that we have both your M.P. and your Oncologist backing you, which is something I have yet to achieve..
The stories of our diagnosis in 2007 and resultant failure to respond to Imatinib are the same, also I have no sibbling donor. Do you know if it is likely that Imatinib didn't work for you because of a mutation, or was it that you were late in diagnosis? My Oncologist virtually refuses to answer this question for me and to this day, I believe that the medical profession had let me down by failing to diagnose until over three years since onset of chronic symptoms.
I apologise if I have deviated from topic!
Vickie

I actually have a mutation, Vickie. Although I understand that there's a lot that isn't understood about responses to these drugs, and people with the same mutation can have a very different response.

I'm shocked that it was 3 years until diagnosis. That must have been such a difficult period. I personally was variously misdiagnosed for about 6 months after first feeling a pain in my abdomen (enlarged spleen) and was in a pretty bad way when I was finally diagnosed. I can only imagine what it would have been like after 3 years.

Early on, my consultant (Jane Apperley, at Hammersmith) told me that she felt that so long as you have an initial response to a TKI, a relatively late diagnosis shouldn't make any difference. I don't know the truth in this, but it was certainly reassuring.

I hope you're doing better now.

Jed