Kidney Cancer Bloggers Have your Say

Patient Advocacy

Well  this is how I explain  what it means to use the title a ” Patient Advocate” To me it   means putting the interests of  Kidney Cancer patients first and foremost and having the experience and knowledge to be able do that.

Julia Black and I have been advocating for rights for Kidney Cancer  patients, since way back when. It was in  2006  that we started this battle and sadly it is still going on today. Only the drugs have changed as more advances are made in our treatment options - but we are still thwarted  by the NHS and N I C E  who will not allow cancer patients to have these drugs funded by our  NHS.

Julia was one of the first cancer patients to fight the battle for the right to access to clinically effective drugs and to challenge rationing of cancer drugs by N I C E, who  stopped cancer patients getting the drugs their Clinicians wanted to prescribe.  It’s a long story and one which needs to be told, all the different patients and families ; the tragedies and the triumphs. Families who then joined in to try and help Mums and Dads and brothers and sisters, Julia and I have files full of letters and emails  and some long  hard fought battles took over 500 letters and months to fight. It was a terrible time and a disgraceful episode in the history of the NHS BUT STILL OUR FIGHT  GOES ON.

Julia was in the brave group of breast cancer patients  who fought, not only to get the drug she and other desperately needed (Herceptin) but  then  had to fight the funding bodies and regulatory bodies  like N I C E to get the drug approved for others .

I met when  Julia  was trying to help a Kidney Cancer Patient friend  called Keith Ditchfield who was trying to get funding for the drug Nexavar. Julia’s knowledge and contacts were working for Keith and through Julia’s efforts Keith was finally funded to have Nexavar paid for by the NHS – one of the first in the Country if not the first. We thought we could take Julia’s methods and my knowledge of the Cancer Networks and PCT commissioning processes  and make it work for the many other Kidney Cancer patients who needed the new innovative  drugs that were being used all over the world to treat Kidney Cancer except here in the UK.

I will continue the tale of what happened as when I have the time, but in the past 3 weeks mine and Julia’s time in increasingly  taken up now with a new tranche of kidney cancer patients who are now being denied Everolimus ( AFINITOR) a new drug manufactured by Novartis.

But please don’t just soldier on alone, do remember there is help here at the James Whale Fund for Kidney Cancer  www.jameswhalefund.or and the Kidney cancer Support Network  www.kidneycancersupportnetwork.co.uk  -  we are here to help each other.  Julia and I  are cancer patients ourselves, we know what this is like and we are doing this for no other reason than we believe cancer patients have a right to proven licensed clinically effective drugs. Please don’t  go on feeling you are on your own with no-one to help you.  Don’t feel you need to pay out for professional advice -  knowledge is power is this situation and we  can unlock that knowledge  for you to help you get the drugs you need. Our methods are used all over the Country by other  bona fide cancer charities who are trying to help their patients access treatments. Don’t be afraid to ask for help – we are  a community  of Kidney Cancer Patients and we need to look after each other. Which is what we  do here  at the JWF and the KCSN – come and join us and together we  will campaign for kidney cancer patients to have  NHS  treatment  “the right treatment at the right time” !!!

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Posted under Afinitor(aka Everolimus/RAD001), Campaigns, Cancer Drugs, General, N.I.C.E., Rose Woodward, User Posts