Kidney Cancer Bloggers Have your Say

Rose Woodward – www.kidneycancersupportnetwork.co.uk

Last night in Scarborough Fred Binch died. Fred was a kidney cancer patient who was denied treatment by his Primary Care Trust. Fred’s Oncologist wanted to treat him him with a new and effective  drug called Everolimus.  Fred had responded well to previous treatments and his Dr’s  thought he would do so again if he was given the opportunity. But somebody sitting behind a desk in a PCT Office miles from the Hospital deciided they knew better than the  Oncologists and the MDT and they had a meeting and condemned Fred to a premature death all to save £100.00 per week. The difference between the cost of the treatment Fred had been taking and the new treatment they wanted to prescribe for him.

Imagine the last few weeks of your life knowing that a  Group of people have decided you cannot have the treatment  your Dr’s say you need. Someone like Fred didn’t have a cats chance in hell of being able to pay for the drug he needed. yet with  dignity  he just kept on fighting as his  disease  robbed him of his speech and his very life’s breath as a tumour continued to grow  putting pressure on his windpipe.  Cruel beyond understanding. This was  a man  who had worked hard all his life, married his childhood sweetheart, raised a family – lived a “good life”.

He was let down by the very people charged with looking after him. Do they care – do they even know? Fred was just another nameless, faceless statistic. A kidney cancer patient who had the audacity to ask to be  treated.

To me he was a quiet hero.  At peace now.

Rose  x

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Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

Here is the latest press releass from the James Whale Fund for Kidney Cancer with regard to the promised Cancer Fund

Cancer Charity Remains “Absolutely Confident” of Cancer Drugs Pledge
26 August 2010
A leading rarer cancer charity has spoken out at claims that the Cancer Drugs Fund promised by the Government is under threat. The James Whale Fund for Kidney Cancer has maintained an open dialogue with the Department of Health since Health Secretary Andrew Lansley announced last month that an interim drugs fund of £50 million would be made available to cancer sufferers.

Nick Turkentine, Chief Operating Officer for the James Whale Fund for Kidney Cancer said; “Since the Government pledged that an interim fund would be made available we have seen nothing yet to suggest that this will not go ahead as planned. I think it’s a little too early in the process to be writing off the Cancer Drugs Fund before it has been tested. For the past 4 years we have been pleading in front of jury’s of PCT administrators to allow patients to have proven, innovative cancer drugs that clinicians want to prescribe. We are still optimistic that the emergency drugs fund could save hundreds of lives as long as these clinically led regional panels do not hold up proceedings.”

Rose Woodward, a kidney cancer survivor and Patient Advocate for the Fund added; “I have absolute confidence that the Prime Minister will follow through with his election pledge to cancer patients and that they will be able to access the drugs their Hospital Consultant Oncologists want to prescribe for them. We know the DOH is working hard to make that happen, we have been given details of how the emergency drugs fund will operate and we will be one of the first charities to test out the new system in October for kidney cancer patients denied cancer treatment by the PCT’s.”

“This is our best hope after many years in the bureaucratic wilderness of the NHS. We believe the Government has recognized the plight of cancer patients and the cancer drugs fund is the first step on a difficult road to give cancer patients a much better standard of care and improve our poor survival rates.”

About the Fund: The James Whale Fund is the UK’s leading kidney cancer charity and was set up in 2006 by broadcaster James Whale who lost a kidney to cancer. Today James continues to lead a full and busy life, as do the majority of people who are diagnosed and treated early. Every year almost 7,000 people in the UK learn that they have kidney cancer; that’s over 16 people a day. And yet the condition – the eighth most common cancer among men – rarely attracts much public attention. Our mission at the James Whale Fund is to try and change that.

For more information about The James Whale Fund for Kidney Cancer, please visit www.jameswhalefund.org or email Freddie Johnson at freddie@fullportion.com or call 0845 225 1500.

I think this is the most pragmatic approach, let’s keep our fingers crossed that it comes off.

If you want more information then goto the fund’s web-site.

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Posted under Andy Thomas, Cancer Drugs

NHS to use four years of unspent taxpayers accumulated funds totalling £1.7 BILLION to pay for managers’ redundancy packages and restructure costs whilst cancer patients continue to be denied life-extending drugs and are left to die with no effective treatment!

Contrary to what we have been led to believe the NHS has in fact carried forward massive “underspends” for at least 4 years whilst all the time denying cancer drugs as “too costly” and subjecting many very ill patients to callous processes (which vary between PCTs) of having to plead for drugs to stay alive longer. It now appears that the DoH will be using these unspent taxpayers/stakeholders funds for lining their own pockets with enormous redundancy payments based on already over inflated salaries (more than 300 NHS people earn more than the Prime Minister – according to the Daily Telegraph) after having stashed cash away over the years by denying patients drugs. You couldn’t make this up!!!

Here is the Evidence

Health Service Journal reports 13th July 2010
“NHS chief executive Sir David Nicholson has warned the Department of Health may seize control of the 2 per cent it told primary care trusts to set aside for “non-recurrent” spending this financial year.
The requirement to set aside the 2 per cent – approximately £1.7bn – was set out in the original NHS operating framework for 2010-11, published last December.
Sir David told HSJ at the time the funds should be used to “fund the costs of change”, including reconfigurations and redundancies.”

Health Service Journal reports 15th July 2010
“The Department of Health has agreed NHS Employers can use a £1.8m surplus from its core contract “to assist their cash flow and balance sheet position” and has signed a new deal with the organisation.”

BBC Reports 16th July 2010
“The NHS in England has set aside nearly £1.7bn this year for reorganisation – more than seven times what it aims to save on management, the BBC has learnt. The fund – held back from the front line – will help pave the way for GPs to take over budgets from managers.
NHS boss Sir David Nicholson said it was there to kick-start the process.”

Letter to all NHS Chief Executives dated 13th July 2010, from Sir David Nicholson, Chief Executive of the NHS, states
“(a) Increasing financial transparency and consistency
Within those requirements we will strengthen our assurance mechanisms during the interim period to keep a tight grip on finances and to standardise our mechanisms for system management. This will include specific monitoring and accounting for:

• financial support for named organisations;

• the detailed application of the 2% non-recurring funds to support delivery of change;

Whilst NICE continue to ration effective cancer drugs using their unfathomable formulae, we have no alternative but to lobby this new government to bring forward the promised Cancer Drugs Fund before it becomes too late for many more patients. Why should cancer patients continue to be denied effective drugs due to cost alone when many ineffective so-called managers are escaping with huge payoffs at our expense!!

You wouldn’t treat a dog like this and at least they have the RSPCA!!

Clive Stone
Founder – Justice for Kidney Cancer Patients
16th July 2010

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Posted under Cancer Drugs, Clive Stone

I have been writing to  a wonderful lady – the partner of a cancer patient called Ian Bowers. Ian and his family have been forced to pay for their own treatment for Ian cancer – the drug Ian’s Dr wants to prescribe for him is SUTENT. But Derbyshire  Primary Care Trust  ( using the word CARE  and TRUST in their title seems outrageous  for this organisation)  will not pay for Ian’s treatment despite the fact ( scans to prove it ) the drug is working and is holding the cancer at bay, despite the fact that there is no alternative treatment, for Ian’s condition which is a very rare cancer, and despite the fact that Derbyshire  PCT is sitting on nearly  £2,000.000 – TWO MILLION, YES ………….TWO MILLION POUNDS……….. UNDERSPENT IN THEIR BANK ACCOUNT.

How can this happen in the year 2010 that a patients needs care and treatment – the money is there to pay for the treatment, the treatment is working but the highly paid administrators and NHS managers decide they know better than the Dr.s

This is a terrifying picture of what is happening to our wonderful NHS now the wrong people are in charge of making decisions about our cancer treatment.

I received this from Jane and with Janes permission, I would like to put it here  so that anyone coming to this site  will know what our fellow patients are going through. I find it almost unbearable to read.

Today was the NHS meeting that will decide whether Ian Bowers lives or dies. Of course no-one within the organisation had the decency or compassion to inform us of the outcome by phone. As it is also a bank holiday and the powers that be will doubtless have both Monday & Tuesday off we expect a letter will arrive at the end of next week. Ian has been vomiting for 2 days, which he has rationalised as “a bit of dodgy fish” but I think it is stress. The atmosphere crackles with tension. Our son has sensibly departed to his girlfriend’s house, perhaps sensing any slight misdemeanour on his part will cause WW3.

I consider myself a liberal pacifist but at this present moment I can understand what drives people to snap: to jump off a bridge or drive their car at 100 miles an hour into a wall; or lash out at someone who dares to cut in front and nonchalantly steals “my” parking space. If this was America I could empathise with the kids that take their parents’ guns and let loose in a shopping centre. The tension is unbearable.

This is what no-one in authority, or anyone who has never had to put their lives literally in non elected bureaucrats’ hands comprehends. Not only do we live with cancer and the very real threat of loss on a daily basis but we have also to cope with inequitable, unjust and infuriating systems that measure our lives in terms of algorithms and acronyms. QALY = quality adjusted life years – will this expensive drug give us value for money? Will the patient (an anonymous, faceless entity) live for more than a few months with the drug than without it and is a few months worth the investment. In many cases “no”. The patient regardless of age, current health and well being is not valued as an individual, a human being, but in terms of cost effectiveness. He/She will die anyway so why prolong the agony? Why give him the hope of a “cure” or the opportunity to have some normality, to take a holiday, to say goodbye, to make his/her peace with the world?

“We have to make difficult decisions” the bureaucrats state, I doubt “public health consultants” or “chief executives” ever lose sleep over the fact they have sentenced a human being to an early, agonising and untimely death because they have ensured that the money saved will provide several more meetings with buffets and drinks for their managers to compensate them for the “difficult decisions” they have to make.

Ian is watching inane TV, unsure how to cope with my impotent rage at the injustice of the situation we blamelessly find ourselves in. So I rage quietly in writing and pour another glass of wine. If I have a heart attack it won’t be the extraordinary “stress” these bureaucrats have caused us – it will be my lifestyle choices that are to blame. People say life is just a ride but sometimes I really just want to get off……

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Posted under Cancer Drugs, Rose Woodward, Social Medicine, Uncategorized

If you are in the nightmare situation of having to fight to get treatment for Kidney cancer – please don’t think you have to do this on your own – we can help you and we will . We have many friends who are themselves patients and carers and family members who can talk with you and hold your hand to help you get through the appalling situation you find yourself in.

If your Oncologist wishes to prescribe treatment for your Kidney Cancer and yet your Local Health Authority ( England – Primary Care Trust -PCT or Wales and Scotland a Local Health Board – LHB ) refuses to provide funding then please email Rose and Julia at contact@kidneycancersupportnetwork.co.uk; we can provide expert advice, individual letters and contacts to lead you through the process and help you understand the policies and how you can challenge the system to make sure you have the best chance possible to get access to the best available treatments.

Julia and Rose have been helping cancer patients in 100′s of PCT’s to get access to proven and effective kidney cancer treatments for nearly 4 long years, sadly here we are 4 years down the line and the NHS are still refusing to provide active cancer treatment to desperately ill kidney cancer patients – we are fighting exactly the same battles now as 4 years ago.

In this day and age it is scandalous that patients not only have to fight their diagnosis of cancer, but they have to use vital time and energy battling with the very organisations that are meant to care for us. We are passionate believers in the NHS and universal care but how can we stand by and let administrators and managers decide who to treat and who not to treat. The decision whether and how to treat patients MUST be made by Oncoligists/Clinicians in Hospitals and not adminstrators sitting behind desks in PCT Offices. We cannot turn our back on our fellow cancer patients and watch them and their families suffer because “the system” will not allow new and innovative, clinically effective treatments to be prescribed to NHS patients.

We are not running a  business, we don’t even have a bank account and we certainly  don’t take money from the Pharmacuetical companies who make the drugs patients need. We are able to do it because we are helped by the James Whale Fund for Kidney Cancer Charity. All over the UK  patients and families donate money, leave legacies and run marathons, hold coffee mornings, curry parties , cycle on fundraisers   to make sure this vital  help is always there for the next person who needs it.  But Julia and I  also do it because we have to;  because  as cancer patients ourselves, we understand  what facing an uncertain future means  and the last thing on your mind should be whether your Doctor will be “allowed ” to prescribe you the treatment  you need in order to keep you alive.

NHS Constitution…….1st paragraph…….The NHS belongs to the people.
It is there to improve our health and well-being, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

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Posted under Arch To Arc 2010, Britain's Biggest Curry Party, Campaigns, Cancer Drugs, Fund Raising, N.I.C.E., Rose Woodward, Uncategorized

This in response to Ben Goldacre’s misleading article in todays Guardian Newspaper  - really disappointed that the writer of such a brilliant book -  BAD SCIENCE – falls into the same trap as he  tries to warn us about in his book – he would do well to reread certain chapters and then take a long hard look at what he has written. His obvious personal  political opinions should come second to evidence – or has he changed his mind?

Dear Ben,

Your article in The Guardian today Saturday 24th April  is  “Bad Research”

It’s pretty obvious  being misled & failing to check the facts doesn’t only apply to the readers of your brilliant book Ben, it is something you have fallen foul of here.

Had you checked your facts about the history of Kidney Cancer Patients battle to get just one treatment option funded by our NHS, you would have noted kidney cancer patients met with David Cameron in August 2008 before N I C E did a U turn and approved Sunitinib, a clinically effective and innovative cancer treatment it had previously turned down on cost.

Now of course N I C E are meant to appraise end of life drugs for terminally ill, rarer cancer patients differently thanks to our campaign. The arbitrary (unchanged 9 year old) figure of £30,000 is no longer used to determine whether or not we offer active end of life treatments( and compassion) to patients facing a terminal diagnosis of cancer.

You would have found out that our patient group recently asked to meet with Andy Burnham and Ann Keen; both requests were turned down.

You would have checked your facts and found out the invoice cost of Sunitinib ? It is an oral tablet form of targeted cancer treatment ; without in- patient, nursing or community costs – the invoice cost to the NHS is £26,000 pa- only N I C E with it’s smoke and mirror tricks could turn that into a scare mongering £55,000.

If you want the evidence Ben it is readily available … ask the leading NHS Oncologists and the many patients around the world still on the drug after 3/4/and even 5 years. Many continuing to work and support their families. We could do with your help to convince the bean counters to help keep us alive Ben, not cause us more distress then we are currently under trying to deal with a diagnosis of a serious cancer and being forced to fight for some sort of active treatment at the same time..

I hope many of you commenting on this post never find yourselves in the position of being denied vital treatment readily available in other social welfare systems around the world but not here in the UK. I am a passionate advocate of our NHS . But it is sufering from it’s own illness; incurable bureaucracy . Let our Clinicians do their job- caring & treating patients, helped , not dicated to, by administrators and statisticians

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Posted under Campaigns, Cancer Drugs, N.I.C.E., Oxford Support Group Demonstration 27-Aug-08, Rose Woodward, Sutent, Uncategorized

Rose Woodward, herself a survivor of kidney cancer and Patient Advocate for the James Whale Fund for Kidney Cancer said “On behalf of the James Whale Fund for kidney Cancer and my fellow kidney cancer patients, we welcome the news today that Conservative Party will set up a Fund to enable patients suffering from rarer cancers to get the cancer drugs they desperately need.

Over the past 4 years, on behalf of terminally cancer patients from all over the Country, we have been pleading in front of jury’s of PCT administrators to allow  patients to have  proven, innovative cancer drugs that  Clinicians want to prescribe. By anyone’s standards it is  cruel and callous to refuse to treat vulnerable patients who  are already having to cope with a diagnosis of a serious cancer.

At the James Whale Fund we are passionate believers in the NHS and universal care. We welcome the day when it is the Doctor who will decide what drugs he will prescribe for his patient not an administrator sitting behind a desk far away from the Hospital.

N I C E (National Institute of Health & Clinical Excellence) denies drugs on the basis of cost, but Oncologists want to prescribe drugs on the basis of clinical effectiveness and the needs of their patients.

Cancer patients need to know the NHS will be there for them when they most need it and at the moment they are being let down.  The NHS must stop saying to cancer patients “You are too expensive for us to keep you alive.”

Rose Woodward.

Patient Advocate for the James Whale Fund for Kidney Cancer & Founder of the Kidney Cancer Support Network

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

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

NICE have rejected all our new drugs for kidney cancer apart from one, Sutent, which was finally won after a huge unnecessary cost of life, due to their usual unfathomable delays and our dreadful NHS Post Code Lottery. NICE recently issued draft guidance to reject our latest drug Everolimus, for second line treatment, and now we await the outcome of their appeal process, which is not due until June. Whilst NICE continues to take its time many have been left with no effective treatment. Patients are again having to apply directly to their own PCT for funding, which is in itself just another time-consuming paper intensive and cruel process. The last thing a seriously ill cancer patient wants to do is to spend valuable days and months in a fight against local NHS bureaucracy.
Cancer patients appear to be an easy target for NHS cost cutting, despite the fact that most of us have paid a lifetime of contributions. We now appear to be little more than an expensive nuisance to some highly paid NHS administrators. It was reported recently in the press that Sophia Christie, who is none other than the Chief Executive of Birmingham NHS, had upset cancer patients by dismissing cancer drugs that provide vital pain relief to thousands, as “death deferring,” and she suggested money would be better used elsewhere. Just to add insult to injury Ms Christie was addressing the NICE Annual Conference in Manchester as a guest speaker when she made these remarks. So who knows what influence she may have had on the very people we rely on for our new drugs? This was particularly insensitive as we look upon each new cancer drug as a “bringer of hope” for the extra time we are given, which is a more positive way to view our options. Also, who knows, perhaps during this extra time a new drug will become available even better than before. If “hope” is taken away then what are we left with? It is worth reminding ourselves that those countries with the best cancer survival rates are those who allow sequential treatment with the most effective new drugs. One could argue that many other interventional medical procedures may be considered as “death deferring”. Shockingly, we have since discovered that Ms Christie now appears to have been appointed as lead advisor to the new NHS End of Life Care “workstream” for us all!
In today’s Telegraph it is reported that Ms Christie says, “We are still in a state where we are operating what is a lot of 19th century healthcare alongside 21st century healthcare. This is an opportunity to move to 21st century healthcare.” Good of her to confirm this, as I would have thought that modern effective cancer drugs are a true representation of 21st century healthcare treatment! She talks about the need to use hospitals less as a way of addressing the £20 billion that the NHS has to save over the next three years. Would it not make more sense for the many duplicated expensive tiers of Senior Managers, Very Senior Managers & Directors to first be culled before they cut the patient care and front line services – or are they just all protecting their cosy non-accountable jobs and associated perks? In 2008/2009 these managers and administrators cost us the taxpayer, some £5.6 BILLION compared with £2.7 BILLION when this government came to power. We certainly do not need 152 PCTs, & 10 SHAs with all the associated job duplication and meetings involved. We could have the best healthcare system in the world but alas it needs a truly dedicated and strong leader to take the NHS by the scruff of the neck and shake out all the time wasters and unecessary processes and put the patient first for once.
Our online petition to the Prime Minister asks for a full and urgent review to be made of the NICE process for appraising all newly licensed and approved Cancer drugs. We already have over sixteen hundred signatures and we are approaching the top of the list in the Health category. So if you want to add your own support to try and make a difference for ALL cancer patients then please do so at:

http://petitions.number10.gov.uk/NewCancerDrugs/

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Posted under Cancer Drugs, Clive Stone

For a long time now several of us who are trying to raise the profile and knowledge of Kidney Cancer have been talking together and swopping our trials and tribulations. Well, last year a few of us got together to try and get equity in treatment options, drugs and strength in numbers  to help argue our case with regulators and manufacturers – we want to improve the availability of clinical trials, get consistent information across Country borders and be able to support each other when we are looking at new KC research, treatment, funding etc.

so…… this letter is from those of us who have put together a steering group to make this dream of a stronger and united coalition into reality; The International Kidney Cancer Coalition.

Please let me know what you think of the idea, we now have several other patient groups in different Countries who have joined us. We have extended invitations to all the Kidney Cancer Organisations  to join us and make our voice louder and stronger….

IKCC – An Open Letter to the Kidney cancer Community  - click to veiw the actual letter in this  PDF  file or scroll down for   simple text version.

An Open Letter to the Kidney Cancer Community

Bad Nauheim, Germany, the 8th of March 2010

Dear Patients, Caregivers, Patient Group Leaders, Medical Experts, and Industry Sponsors:

This open letter is about the beginnings of IKCC, an international network of kidney cancer patient groups, along with background information about funding of this initiative.

What are the objectives of IKCC?
IKCC stands for International Kidney Cancer Coalition. It will be a network of independent kidney cancer patient support groups from around the world. The organization was born from a strong desire among various national patient groups to network, cooperate, and share experiences.

IKCC will be a supplement to existing organizations, and we hope to future ones as awareness of kidney cancer grows around the world. Our aim is to network efficiently, to share information, to develop and promote best practices in patient support and patient advocacy, and to meet unmet needs expressed by the various groups. All kidney cancer groups are welcome, as are individuals interested in starting advocacy and support groups in their own countries.

Why an international coalition?
Experience with other rare cancers proves this type of international network is valuable, supportive and inspiring. Most cancer associations, especially for rare cancers, have limited resources. It makes absolute sense to share information, to cooperate, and to work on similar projects together. Some examples of successful international coalitions:
• International Lymphoma Coalition – a worldwide network of lymphoma groups
• International Brain Tumour Alliance – an international brain tumour advocacy group
• Myeloma Euronet – European network of 42 groups from 20 countries
• Sarcoma Patients EuroNet Association – European coalition of 17 groups from 13 countries

The preliminary mission of IKCC is, “Networking, collaborating, and advocating on a global level to better support patients in each nation.” We believe that together we will be able to speak as one voice to expert panels and to the industry on behalf of many kidney cancer patient support groups.

How will IKCC be funded?
IKCC’s funding policy is based on the well-known “Code of Practice Between Patients’ Organisations and the Healthcare Industry” of ECPC, the European Cancer Patient Coalition. ECPC is a well-established organization comprising over 300 European national and international cancer patient organizations that have adopted the code of practice. IKCC already adheres to this code. After registration as a legal entity, IKCC will be a member of ECPC. In the meantime, each organization involved in IKCC is governed by the rules of transparency and ethical relations within their own country.

Our first conference – May 14-16, 2010:
The main objectives of the conference in Frankfurt are to learn more from each patient organization and to evaluate the future objectives and role of IKCC.

All the work for the conference has been done on a voluntary basis alongside our regular work for our national organizations. To cover costs for a global conference, we asked various pharmaceutical companies to support this international project with unrestricted educational grants. We are pleased to have their support. When agreements are finalized, we will publicly announce all sponsors in accordance with the ethical demands of full transparency in funding.

In conclusion:
IKCC will be a friendly, positive, welcoming organization centering on a common cause: Every day we see patients dying from kidney cancer. We would like to do all we can to achieve the best support, care, and treatment for kidney cancer patients and their families everywhere in the world.

With best regards on behalf of the IKCC Steering Committee:
Dr. Marion Beier (DE), author
Markus Wartenberg (DE), author
Other members:
Tony Clark (CDN)
Vandana Gupta (IND)
Deborah Maskens (CDN)
Andrew Wilson (UK)
Rose Woodward (UK)

Association: IKCC Registration pending.
Phone: +49-6032-9492-439
ikcc@lebenshauspost.org

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Posted under Campaigns, Cancer Drugs, General, Rose Woodward