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Thousands of people struggle to access treatment for rarer cancers in the UK. Here are just some of the stories behind the campaign.
'Pleading for your life isn't something anyone should have to experience. I was diagnosed with kidney cancer in 2004. My oncologist’s application for effective life-prolonging drugs was rejected by my PCT for reasons including lack of NICE guidance, cost and its efficacy. My circumstances were not considered exceptional, but I eventually won my appeal and started treatment in 2007. By the end of the process I was mentally exhausted and physically a wreck.'
'I was diagnosed with lymphoma affecting my spleen and bone marrow in 2005. The impact the drug could have on my life dramatically outweighs its cost. It would mean fewer side effects, a good quality of life, and furthermore, peace of mind. Instead being refused the treatment recommended by my consultants denies my right to optimal care and treatment. This leaves me and many others at a huge disadvantage and failed by the system.'
'I was devastated when funding was refused for the chemotherapy trabectedin, which my oncologist believed was the only cancer treatment left for me. He felt my application wasn't judged fairly because it didn't take into account my condition is exceptionally rare. One of the reasons was ‘poor evidence to demonstrate its clinical effectiveness’. Yet, the only way it can be gathered is by funding more patients like me and producing statistical studies.'
'I asked my oncologist if it was possible to get a new drug for my second line cancer treatment. I was shocked to find out that I could be refused access to this treatment because NICE considers the drug too expensive. This drug has a proven ability to extend my life. If no other treatment is effective then I may only have another six months to live. I am in danger of having my life cut short. The decision to deny me treatment based on cost is effectively saying that I am not worth it.'
Visit our cancer information pages to find out if you are eligible, and how to apply to the fund.|
Have you had problems accessing treatment? Share your story in the Online Community| or by emailing firstname.lastname@example.org|
For answers, support or just a chat, call the Macmillan Support Line free on 0808 808 00 00.
Find out what you can do if treatment isn't available.
If you have any questions about Macmillan we would love to hear from you| .
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© Macmillan Cancer Support 2013
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