JenkazMrs Posted February 11, 2008 Share Posted February 11, 2008 Action Needed! Patients and carers, NICE has again knocked back guidance for the drug Tarceva. In a press release on Friday they said that the drug was not cost effective. Basically meaning that patients will still have a fight on their hands to get access to the drug. This is one of many approved drugs being denied to cancer patients. Patients who live in the North East and Cumbria will still have access to the drug. Other PCT’s throughout the country are giving it to patients creating a post code lottery! This has been dragging out for some time now. Final guidance will be issued in April. Patients need this drug now! NICE are supposed to fast Track cancer drugs but instead they are sentencing patients to death! ON June the 6th last year we staged a rally outside NICE head quarters in London while I attended the meeting inside. Which created media attention. I would like to plan a protest so need some bodies to attend . If I can drum up some support I will again involve the press and TV adding weight to the campaign. Regards, Deanne Jenkyns Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 11, 2008 Share Posted February 11, 2008 Is there anything we can do satellite wise I.E. research or letter writng that may help the cause? I can not attend but will gladly hep in any way possible you know so let us know if we can do anything else possibly!!!! For our members Here is Deanne Website Link: http://www.lc-action4life.co.uk/ Quote Link to comment Share on other sites More sharing options...
JenkazMrs Posted February 11, 2008 Author Share Posted February 11, 2008 Hi Randy, Thanks so much, if I could get some patient statments who have benefited from Tarceva. what difference it has made to their lives how long they have been on it. Date of diagnosis ect, that would be great. Deanne xxx http://www.lc-action4life.co.uk Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 11, 2008 Share Posted February 11, 2008 Bump for SOME ASSISTANCE!!!!!!!! Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 12, 2008 Share Posted February 12, 2008 bump Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted February 12, 2008 Share Posted February 12, 2008 I would love to share my story with them... Let me know what you would like.. Jamie Quote Link to comment Share on other sites More sharing options...
JenkazMrs Posted February 12, 2008 Author Share Posted February 12, 2008 Thanks so much, Randy...you made me laugh thnks for your support as always. Jamie, Thanks your a star! Deanne xxx http://lc-action4life.co.uk Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 12, 2008 Share Posted February 12, 2008 Bumping for testimonials needed!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 13, 2008 Share Posted February 13, 2008 Wish I could help, but when I did my treatments they didn't even have Tarceva. But, I'm sure they were working on it! Good Luck to you! Quote Link to comment Share on other sites More sharing options...
Shar Posted February 13, 2008 Share Posted February 13, 2008 Deanne I have PM'd you and will do what I can. Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 13, 2008 Share Posted February 13, 2008 AN angry cancer sufferer today warned a feared drug decision could be a "death sentence" for patients fighting for precious time. Jimmy Jenkyns, of Bainbridge Avenue, Simonside, South Shields, who was previously forced to pay £1,700 a month until health bosses agreed to pay for Tarceva, was delighted when the North of England Cancer Network agreed to offer the drug for cancer patients. After using the drug, a scan revealed Mr Jenkyns' tumour on his lung had shrunk by a third and certain secondary tumours had disappeared. Although not a cure, Tarceva has been shown to extend life expectancy and improve the quality of life for some patients. But now English drug watchdog, the National Institute for Clinical Excellence (Nice), is set to issue draft guidance stating that Tarceva "is not a cost-effective use of NHS resources," compared with conventional treatments. Mr Jenkyns, 55, who was diagnosed with lung cancer in April 2006, said: "If this guidance goes through, it will be like a death sentence for people needing the drug. "This is the only chance some people have to extend their lives. I think this is all about cost and saving money. Ridiculous "It's absolutely ridiculous how this has dragged on and it will be a terrible blow if Nice advise primary care trusts (PCTs) that Tarceva is not cost-effective." His wife, Deanne Jenkyns, 39, said: "Basically, there are no other options for some people with cancer. "If Tarceva is withdrawn, it will be like leaving people to die. "At least it offers people some hope, but that hope could be taken away if the final advice is for PCTs not to prescribe this drug. "I cannot see how it could be withdrawn for someone like Jimmy, who has been on Tarceva for some time, but this could affect cancer patients who haven't yet been prescribed the drug." The greater availability of Tarceva means more people are able to take a tablet, instead of having invasive second-line chemotherapy. A spokesman for the North of England Cancer Network said: "This is interim guidance that has been issued by Nice for the use of Tarceva for the non small cell lung cancer. "North East and Cumbrian oncologists will continue to prescribe this drug for patients with a clinical need. "We will review the position for new patients when Nice issues final guidance." Meanwhile, a spokesman for cancer charities the Roy Castle Lung Cancer Foundation and Cancerbackup, said: "We strongly urge Nice to take account of the views of lung cancer patients and their doctors and overturn this announcement." Quote Link to comment Share on other sites More sharing options...
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