Kidney Cancer Bloggers Have your Say

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

Share on Facebook

Posted under Campaigns, Cancer Drugs, General, Rose Woodward

Let’s see if this has any impact.  I’ve cc’d my local MP and prospective MP and Sir Andrew Dillon as it usually forces them to reply and aknolwledge

Dear Professor Littlejohns,

I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.

Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?

As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.

You seem (as usual) to have based this negative decision purely on cost.  The QALY calculation you use for some reason is not disclosed to the public due to  IPR which appears ludicrous given this is a public service.  I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.

As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health.  I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.

What real representation did you have from patients?  How much weight was attached to patients as you came to your conclusions?

It is also extremely unfair to only give the public (patients) a few weeks to put their case together.

Why are we given such little time?  If you want a response from patients then they need to be engaged at an earlier stage.  It is outrageous that we only have to the 2nd March to put a case together.

These drugs offer precious time to patients and families.  We are not talking weeks we are talking significant numbers of months and years (as you are well aware).  What cost do you attach to this?

I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people?  At £100/day this is not a significant cost.

Kidney Cancer is not a large drain on NHS resources in comparison to other cancers,  so why are we treated in an inferior fashion?  Is it because we are small minority that can’t fight back?

All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.

I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel.  Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.

Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.

I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level.  The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.

Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.

I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients.  I also respectfully ask that you review what is clearly a floored approval process.

Yours Sincerely

Andy Thomas

97 Sheepcot Lane

WATFORD

WD25 0DU

cc Sir Andrew Dillon

cc Claire Ward MP

cc Richard Harrington

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Share on Facebook

Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

Well I suppose it would be arrogant of me to presume that the leading headline on the health section of the BBC’s website would be about N.I.C.E.s disgraceful denial of Afinitor as a second line treatment for Kidney Cancer patients, however I was rather hoping that it would at least feature somewhere on the BBC Health news, but no.

The great thing though is that they’ve given us a smashing example of how we waste our money in the NHS on trivia that nobody cares about and yet deny valuable life extending drugs that do matter.   Not much logic going on from what I can see. 

So what’s the waste I was talking about?  Well apparently we all care deeply about “backless hospital gowns” and how our dignity is compromised by these odious garments. I have to admit that was the first thing on my mind as I was carted off to theatre for my Kidney Removal (nephrectomy), it certainly wasn’t the fear of maybe not coming out of it, or the fear of a cancer diagnosis, oh no, the fist thing I thought was …“Does my bum look big in this?” (and for those of you wondering, yes it did look big …… very big!)

The Offending Article

Sorry to make a joke of this but come on the BBC what were you thinking? yes it’s an interesting(‘ish) article, but not one mention of  N.I.C.E.s decision today on Afinitor anywhere on either the UK section or the health section of the website?  In an ideal world we’d have an NHS system with enough cash floating around to chuck away on “nice to haves”, but somehow I don’t think we’re there yet.

Maybe I’m doing old “Auntie” an injustice and there is mention of the decision on their website, in which case I apologise unreservedly, and anyway thanks for pointing out that Ann Keen (Health Minister) sees this as a burning issue.  That £25,000 you gave to the design council for the gowns could have funded 5 cycles of Afinitor for a patient……. Nice one Ann!!

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Share on Facebook

Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

Here’s the mission statement (or purpose) of N.I.C.E. according to the front page of their web-site

NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health

So you’d think with this kind of remit they’d be working in our favour, and when I say “our favour” I mean the population of the UK and specifically its patients.

Yet when it boils down to it what they really do is to create negative guidance that allows others to wash their hands of the situation, such as the government who can just say “well this is down to N.I.C.E.”.   It also enables PCTs to deny patients treatment despite what the specialists say.

I’ve been to meetings, received mails, read articles where time and time again specialist oncologists are screaming for drugs that they know will help and yet they are denied.  It’s an appalling state of affairs and I would hate to have to be the one that has to give a message to a patient that says “yes, there is a drug that could help, but I’m afraid you can’t have it because it costs too much”.  It’s inhumane.

You can tell this is N.I.C.E.’s stance because of the clear statement again made on their front page

Disinvestment. Decommissioning. Saving money. Whatever you call it, the NHS faces an unprecedented financial challenge.

Use NICE guidance to help you to cut costs and maintain and even improve services.

Ok, so it would be churlish of me to not admit that the sentiment is that they are there to help, but it’s how they go about it that gets me.  This statement is all about costs, where does it really address the need of the patient?

I can plainly see that an independent body such as N.I.C.E. that looks at new drugs and treatments and offers guidance on their usage is no bad thing.  However the guidance is just that… guidance, but the PCTs use this as ”carte blanche” to deny patients, on what basis? Certainly not on clinical grounds.  No, it’s just cost.

I’ll use the example of Affinitor which has just been cruelly denied as a second line treatment for Kidney Cancer patients.  So, here we have a drug that has been clinically proven to work, every specialist (that I know of) in the country is backing this up.  A drug that’s been approved for usage in other European countries and in the US and yet for some reason (cost) we can’t have it in the UK.

What I would love to see N.I.C.E. do is to fight Whitehall on our behalf, not to just sit there and do the bean counting for government.  This organisation seems able to pronounce death sentences on patients by denying them drugs that extend their lives, and yet it seems unable to fight the waste in the NHS and other areas of government.  They are closer to Whitehall than any of us, surely they can see that waste AND actually fight to do something about it?  Why on earth, if they are truly independant would they seek just do the govenerment’s bidding?

Why leave it to patients and the charities to fight? I find it so had to believe that they are impervious to the waste, they probably see it more than we do.  Help do something about it!

So come on N.I.C.E. do what you’re supposed to do, do what you were setup to do, stop being a bunch of bean counters, stop measuring everything against some Qualy calculation.  Stand behind the patients and population you proclaim to be helping.  

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Share on Facebook

Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

Today we hear that once again  N I C E have refused to provide NHS  kidney cancer patients with  licensed  cancer drugs for kidney cancer. Sometimes I despair of this NHS. In the same week that Gordon Brown announces that each cancer patient will receive a one to one care plan and home visits from nurses, the same cancer patients are told they will be refused treatment that is readily available throughout the rest of world. And not just  Countries like the USA where insurance companies hold sway over who gets what, but countries like France and Germany  and Sweden who operate social welfare systems. What is the UK doing wrong; why can’t we look after our own desperately ill cancer patients in the same they do in the parts of the EU. Will we ever  achieve their high standards of care while UK patients are refused treatment with clinically  effective and proven cancer drugs.

Perhaps someone from N I C E  can explain their actions to the kindly people throughout England who run relays in aid of cancer research, who hold coffee mornings, who clean cars on Saturdays etc  and do so because they want  cancer patients in their communities to receive the best care possible and not condemned to die prematurely because the NHS  can’t manage it’s  own money despite the huge salaries they pay their administrators.

Afinitor,  the drug are refusing to pay for  to help kidney cancer patients,  will cost  less than £100 per day – last week a Director of Commissioning  ( thats costing and buying services to you and me) for a PCT  in London was offered a salary of  £800 per day !!!!!!! . 

Kidney Cancer patients are ill & many are desperately distressed by what they & their families are going through, but we are not stupid. We know that NHS funds are not infinite, but when  for instance,  someone ( who exactly? )  at the Department of Health can sign cheques for £40,000,000 ( forty million pounds) for legal contract advice about the NHS IT programme that doesn’t exist, how do we rationalise that to cancer patients who are told they are too expensive to treat ? Why do we tell patients  their treatment is not a cost effective use of NHS resources when we have Health Authorities sitting on unspent surpluses in their annual accounts. Are cancer drugs are too expensive at £100 per day when we pay Directors of commissioning in PCT’s  £800 per day ? Will we soon reach a time when  the NHS will stop treating ” expensive”  serious road traffic victims, will we stop offering “expensive” dialysis at £35000 pa ,who will say if  heart or lung transplants and after care  are  too expensive? 

I have a dear friend who has terminal cancer who said to me – “being told you have terminal  cancer is not the worse thing in the world, far worse is being told there is a  treatment that will help you but you can’t have it”. That is the reality kidney cancer patients are living and dying with. Do you want your Mum or Dad or son or daughter to spend the last few months of their life with these words ringing in their head. “You are not worth keeping alive”   It is an unforgivable way to treat anyone let alone cancer patients  and their families !!

Share on Facebook

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

Yet again N.I.C.E. are refusing to approve a second line drug Everolimus (Afinitor) for treatment of Renal Cell Carcinoma (Kidney Cancer) patients.

On what basis?  Yes, you guessed it, pure cost.  It’s simply dreadful that we’re in this position again having just been through this with Sutent.  When patients life’s are at stake we are dictated to by a committee driven not by compassion but by pounds and pence, it just isn’t right.

Based on what? The drug has only recently come onto the market and to that extent there hasn’t been a long enough period of time to jump to conclusions.

This kind of stupidity stifles the oncologists who are left with their hands tied and no treatment options.  The ability to mix treatments is taken away from them.  It’s a hard enough disease to contend without these barriers.

The toughest part of this is that we’re not dealing with thousands and thousands of patients, but just a small minority of people that could gain enormously.   Whilst extra time appears to be irrelevant to N.I.C.E. it’s huge to the individual and their families.

Where is the compassion? I wouldn’t wish this disease on anybody but there are times I wonder if things would change if just one of these people at N.I.C.E. were directly effected , their minds would soon change.

As a rejoinder don’t think for one second that you’re protected by private health, these drugs are only made available for the first year and then it stops and you’re back in the NHS system.

An additional frustration is that some of these drugs are developed in the UK and yet are made available in other countries and we are left behind.  Why is that?  Are we so poor?

As usual we’ve been left with but a few weeks to appeal against the decision an as usual they’ve kept that part quite.

Come on N.I.C.E. get your act together and start making decisions based on compassion and not cost.  If N.I.C.E. ‘s only purpose is to decide on a QALY factor then I fail to see why they are there in the first place.  Anybody can do maths.  We want more than that, we want an independent committee that makes its decisions based on clinical evidence and human factors.  If N.I.C.E. is not making these decisions weighted on the side of the patient then I fail to see its value other than a way of the government being able to pass the buck.

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Share on Facebook

Posted under Afinitor(aka Everolimus/RAD001), N.I.C.E.

I was asked for a comment about the NHS Constition today – had to give it some real thought  because I think the NHS Constitution is a great first step to recognising the real sense of ownership alot of patients feel towards the NHS. We feel passionately about our local Hospitals and the Clinicians & Nurses who look after us. But sometimes patients can feel lost because the NHS is such a huge machine with a life of it’s own, so many different organisations each with their own policies, guidelines and initiatives and it’s easy to feel individual patients to feel they don’t matter anymore.

As a survivor of Kidney Cancer, I have so much to thank the NHS for and I do so on a daily basis . Kidney cancer is a type of cancer which is difficult to treat and I’ve received all my treatment from the NHS which cared me during my illness. But I know other cancer patients who have been let down because “the system” is seen to be more important than the patient. The Constitution needs to be matched by actions at the coal face in GP surgeries, Hospitals and PCT’s and organisations like N I C E.

Patients need to know their views are valued – no more box ticking .

Ever  The Optimist  Eh ??  Rose Woodward  www.kidneycancersupportnetwork.co.uk

Share on Facebook

Posted under Cancer Drugs, General, N.I.C.E., Rose Woodward

During the period that many hundreds of kidney Cancer patients were denied life extending drugs and died prematurely ( these kidney cancer drugs are readily availanble in other parts of the world on social welfare systems) the NHS spent £ 40,000,000.00 – YES 40 MILLION POUNDS – on solicitors and legal fees to two companies for “supporting” the NHS to draft contracts about their IT programmes”. !! The answer came in response to a question by Conservative shadow health minister Stephen O’Brien about the amount spent in legal fees for drafting contracts for the National programme for NHS IT in the Health Service. Health minister Mike O’Brien responded: “Between 1 April 2002 and 31 March 2009, the total fee paid to Allen & Overy amounted to £10,309,877 and to DLA Piper UK LLP £28,864,938, although Allen & Overy ceased to advise after 2006.” You couldn’t make it up ……. If this weren’t so desperately sad and tragic and cruel for kidney cancer patients and other cancer patients denied treatment their Clinicians want to precribe, it would be laughable – who decided this money was an effective use of NHS resources ??? I just to know how and why they had to spend this amount of NHS money which should be prioritised to front line care, on legal advice. Do we not employ enough civil servents that they can give the NHS legal advice. If we don’t and heaven knows why not ,then why not go out and employ someone ? you could hire a lot of IT lawyers for £40 million. It is an unbelievable sum – made worse by the fact we don’t even have a workable It system for the NHS and this sum doesn’t include the IT itself just the lawyers for advising about it. How did someone decide this was reasonable. Someone needs to get a grip of what is going on the NHS and fast, some of the managers are out of control !!

I’ve posted this on the Kidney cancer patient forum at www.kidneycancersupportnetwork.co.uk

Am I the only person who thinks this is totally out of order?

Rose Woodward -

Share on Facebook

Posted under Cancer Drugs, General, Rose Woodward

The NHS is a wonderful thing – no longer do whole sectors of our population go without treatment because they can’t afford to see a Doctor………….. But Kidney Cancer patients are still denied clinically effective drugs while the NHS managers reward themselves with huge pay rises and bonuses. In a recent article it was quoted there has been a 43 per cent rise in the costs of managers, while spending on clerical staff rose by 78 per cent at Primary Care Trusts (PCTs) And their expenditure on management consultants and temporary staff more than doubled. We wonder why the Government wastes “ludicrous and heartbreaking” sums on moving bits of paper around rather than front line services. From 2004 to 2008 the Department of Health spend on administration went from £1.43 billion to £2.14 billion – a rise of 49.5%. The total spent on managers went from £566 million to £808 million, a rise of 43% Spending on other administrative staff increased by 78 %, from £606 million to £1.07 billion. According to an analysis of the DoH figures by the Conservative Party PCT spending on outside agencies rose from £53 million to £139 million – an increase of 162 %. That is just unacceptable. Katherine Murphy, from the Patients Association, said too often the millions spent on NHS bureaucracy did little to help patients, while the systems they set up left too many worse off. “These sorts of sums are ludicrous – and especially so given the heartbreaking stories we hear all too often about patients who have been denied their most basic needs,” Mrs Murphy said. Something is very wrong when those tasked with of looking us look after their own interests first !!

Share on Facebook

Posted under Cancer Drugs, General, Rose Woodward

PRESS RELEASE 05.01.10

Callous Comments Cause Concern for Kidney Cancer Patients

At the recent annual NICE (National Institute for Health and Clinical Excellence) conference held in Manchester in December, the James Whale Kidney Cancer Patient Advisory Group was shocked at the language used by Sophie Christie, the Chief Executive of Birmingham North and East PCT. She spoke somewhat callously when describing the pressure new drugs put on the system and went so far as calling palliative care drugs “death deferring”.  It’s Ms Christie’s viewpoint that concerns the Cancer Patient Advisory Group, as she is the Chief Executive of the Primary Care Trust leading the new NHS Quango who have just been given a seat on the NICE appraisal committee which will give PCT’s significantly more control over which drugs are approved and which are not. This is especially critical to kidney cancer patients as it’s a type of cancer which cannot be treated with chemotherapy or radiation. Once kidney cancer spreads, then these medications are the only hope left for most of these patients.

According to Rose Woodward, a kidney cancer survivor and head of the James Whale Patient Advisory Group, “Cancer patients and families trying to come to terms with terminal cancer will be shocked to hear an NHS Director describe the “end of life” process in this way.  I thought it was a particularly insensitive speech. The NHS constitution, published just last year, promised to care for us to the end of our lives and treat us with care and compassion. It shouldn’t matter whether you are a heart patient, or just elderly, whether you are a cancer patient or victim of a serious accident, any patient facing a poor prognosis should expect the NHS to provide the best treatment available.   If we want to do our best for our people and improve the awful cancer survival rates in the UK, then the clinicians should decide who to treat and not accountants or managers.”

Nick Turkentine the Funds CEO said “Remarks like those made by Sophie Christie are never helpful when kidney cancer patients are so short of treatment options; and I fully understand why patients would be angry.” There has to be a way to strike a humane balance between cost and life. The cost is of course important, but when medication has the potential to offer a terminal patient additional quality time how can we put a price on that?

About the Fund: The James Whale Fund is the UK’s leading kidney cancer charity and was set up by broadcaster James Whale who lost a kidney to cancer in 2000; the head office is located in Cambridge city centre. 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 6,200 people in the UK learn that they have kidney cancer; that’s over 16 people a day. And yet the condition – the tenth 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

Share on Facebook

Posted under Cancer Drugs, Rose Woodward