Cancer patients in Oxfordshire have set up a campaign group to fight the county's "draconian" policy over the life-extending drug Sunitinib.
The group, yet to be officially named, meets for the first time next week to decide its strategy.
But kidney cancer patient Clive Stone, from Freeland, has already written to Oxfordshire Primary Care Trust to request a meeting to discuss its policy, and appealed directly to Health Secretary Alan Johnson to intervene.
He also remains in regular contact with national campaigner Kate Spall, 36, who described Oxfordshire PCT's policy as one of the most draconian in the country.
Mr Stone, chairman of cancer support group Frog (Friends of Renal Oncology Group), said the new group would fight for cancer patients across Oxfordshire.
So far, 20 patients in the county have been denied Sunitinib because of Oxfordshire PCT's policy of only prescribing the drug in exceptional circumstances. Only one person, Stephen Dallison, 33, from Oxford, has successfully appealed against the PCT's refusal.
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Mr Stone, 60, said enough was enough. He said: "Our aim is to try to pull together all the various people around the country to present a united front, but getting our own group up and running is the most important thing at the moment."
Mr Stone has not personally applied for Sunitinib, but his consultant has told him he may benefit from the drug in the future.
He said: "I feel angry and frustrated. If I knew I had the drug at the end I could get on with my life. But I'm a determined person and I'm not going to give up."
The Department of Health rules say that Sunitinib should not be denied simply because the National Institute of Clinical Excellence had not published guidance, but prescribed by PCTs "based on an assessment of the available evidence".
Oxfordshire PCT only considers prescribing the drug when a patient's clinical circumstances differ significantly from the general population of patients and they are likely to benefit from the treatment more than an average patient.
PCT spokesman Clare Clayton said: "There will be a response to Mr Stone's letter once it has been received."
[bold]Soon, our charity will make available an online advocacy tool that patients and their families may use to lobby elected officials for better access to therapeutics for renal cancers. Interested parties should visit www.kidneycancer.org or email office@kidneycancer.
org for additional information.[/bold]
Soon, our charity will make available an online advocacy tool that patients and their families may use to lobby elected officials for better access to therapeutics for renal cancers. Interested parties should visit www.kidneycancer.org or email office@kidneycancer.
org for additional information.
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