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Article from the Northants Evening Telegraph

Jed AlexanderADVERTISEMENTPublished Date:
04 December 2009
By Bernie Goodjohn
Wellingborough reporter
Jed Alexander's life hangs in the balance after a drug he needs to fight leukaemia was withdrawn because it is too expensive.
Mr Alexander, 31, from Little Harrowden, was diagnosed with chronic myeloid leukaemia in 2007 and was given the drug imatinib.

It has not been working as well as it should and Mr Alexander says he only has two options – a stem cell transplant, which is unlikely to work, or drugs called dasatinib and nilotinib.

The National Institute for Clinical Excellence (NICE) has recommended dasatinib and nilotinib should not be made available on the NHS.

Jed says if he can't get the drugs he will die, but if he can get them there's every chance he can live life to the full and have a family with his wife Bhiru, who he married in March this year.

He said: "If dasatinib and nilotinib are not made available on the NHS, it is very possible that I could die as a result.

"I'm only a young man, I recently got married to a beautiful woman, and we're looking to start a family.

"I'm also currently studying to become a counselling psychologist – a profession that is based on helping others. All of this will be lost if NICE's decision just leaves me to die. But if I am allowed these drugs I could live a rich and full life."

Jed's consultant, Professor Jane Apperley, chairman of the Department of Haematology at Imperial College London, said: "Unfortunately for Jed and some 30 per cent of patients in the same situation, the preliminary decision by NICE is not to approve these drugs in England.

"This decision was made on economic grounds and should not go unchallenged. It's a pity Jed doesn't live in Scotland or other parts of Europe where there is ready access to the drug in such a case."

A spokesman for NICE said it could not comment on individual patient cases.

Professor Peter Littlejohns, clinical and public health director at NICE, said: "Although there is some evidence to suggest that dasatinib and nilotinib could be considered clinically effective, the quality of that evidence was extremely poor.

"This, coupled with the very high cost of the drugs, meant that the independent appraisal committee could not recommend these drugs as an appropriate use of NHS resources."

NICE will issue its final guidance on the drugs to the NHS after its public consultation finishes on Monday

From that article:

"Although there is some evidence to suggest that dasatinib and nilotinib could be considered clinically effective, the quality of that evidence was extremely poor."

Absolute garbage. It's the best evidence that's currently available. These drugs are known to fight mutations the doctors know that and have told them so - and are an alternative for people who can't tolerate Imatinib. NICE know it as well. It makes my blood boil, it really does.

Well done Jed and Bhiru. I'm waiting for my MP to reply to my letter from a week and a half back. Nothing at all yet.

For goodness sake Dennis, he's busy filling in his expenses claim form and doing his Christmas shopping!!Mine, Charles Hendry (the name says it all) has passed my coments on to the Secretary of State for Health and doing that took him over a week..
Vickie

That comment really got up my nose as well Dennis. I think it is completely contrary to the ACD, which implies that there is agreement that these drugs are effective but the cost effectiveness cannot be established conclusively from the data available. I was also insensed tonight when I think it was stated on the One Show that NHS treatment for a 70 stone man costs £100,000 a year and he just lays in a very large bed and eats! I hope I misheard what was said. Very well done to Jed for getting the article published. I hope the nationals pick it up.

Simon