The refusal to allow certain treatments for kidney cancer on the NHS has led to protests in London, UK, by families of those affected.
Protesters waved placards insisting they “deserved the right to life” as they gathered outside the headquarters of the National Institute for Health and Clinical Excellence (NICE) in central London.
NICE issued draft guidance earlier this month rejecting the drugs Sutent (sunitinib), Avastin (bevacizumab), Nexavar (sorafenib) and Torisel (temsirolimus).
The draft guidance rejects the drugs, saying they are not cost effective for patients with advanced and/or metastatic kidney cancer.
Although the medicines do not cure the cancer, they do extend a person’s life by a matter of months.
Patients and their families handed letters to the organisation calling for a rethink on the guidance.
Roger Grace, 60, from south Devon, said he was only given six months to live before he started taking Sutent.
“It has kept me alive for two years. I’m living proof that this drug works. It is absolutely imperative that other people are given these drugs. It needs to be available to everyone who has a clinical need for it.
“It needs to be decided by consultants and not by the accountants at NICE.”
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“Drugs should not be rejected for cost reasons. In fact drugs are not rejected just for cost reasons; although it is unfair, we have to stop and think how lucky we are, because after all we have a health system that allows us to have rather expensive treatments. In the USA or other European countries, it would be impossible to have any treatment unless you have the money to pay for it.
However, it is really unfair to decide that a drug is not cost-treatment effective under the grounds that that particular drug is going to give to a patient 3months more of live. But, unfortunately that is how it is. If we think about an ideal world, in which money and power are not ruling everything, that would never happen. Sadly that is not our world. It should not be like that; is there anything that we can really do to stop that? I don’t think so.” – Aurora Del Pozo, Leicester, UK
“Every pound, dollar or euro spent in medicines that doesn’t have significant improval in survival is a pound, dollar or euro that you waste. You lose an opportunity to investigate really effective treatments or to treat other patients. An individual survival longer than what is expected doesn’t mean that the drug is responsible for that survival. If a patient is said to have 6 months to live, that is just an “average”. It doesn’t mean he is only going to live 6 months, and it doesn’t mean he is going to live 2 years because of the treatment. He could live 2 years because of the treatment or he could live 2 years just because the evolution of his disease was going to progress that way. Do not forget that medicines have adverse effects. How do we know if he could live more than 2 years if not treated? The only real answer to those questions are well designed and well carried out clinical trials, not individual cases or opinions.” – Ignacio, Barcelona