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Jane Thompson

Adam,

I have just watched your documentary, The Price of Life, and although strictly speaking I'm not a journalist I feel I am better placed than many to comment on it.

Since my diagnosis of metastatic renal cell carcinoma in Feb 2007 I have kept an online blog of my condition and treatment. I also have contributed to many articles on kidney cancer and have been a campaigner to get life extending kidney cancer drugs funded by the NHS.

In March 2008 I was fortunate enough to gain funding for Sutent (Sunitinib malate) at a time when most PCT's were refusing funding and NICE were still appraising the drug. I say fortunate because I had been told I hadn't long to live.

That was 16 months ago - and here I am still. My quality of life is excellent. In fact a documentary about me is in the process of being edited right now. The point Im trying to make is that these life extending drugs can have a dramatic effect. Its not just a case of a couple more months, it can be years of valuable, productive life.

I thought your documentary very balanced and informative and it certainly asked the right questions. My only criticism would be it was way too sombre and depressing from a patients point of view. Where were the success stories like mine? The proof that these drugs can indeed be miraculous for those of us with a terminal diagnosis?

Regards,

Jane Thompson

http://a-journey-of-another-kind.blogspot.com/

Marcelo Susevich

Dear Adam,

Thanks for making the people aware of these issues.

I work with the Argetina Myeloma Foundation.
It would be great if you can make your documentary available for viewers outside of the UK.
I would be happy to help with spanish subtitling.

Kind Regards,
Marcelo

dan

a very good insight into the attitudes of the number crunchers who run NICE.
i do see the need for number crunching,but the voting attitude.
a yes is a yes and a no is a no.
changing ones vote to an opposite to make ones vote nutral!i don't think so,lives hang on the outcome!
what an uncaring attitude.

Peter West

Adam, You might want to look at our attitudes to these drugs versus our attitude to long term nursing home care. Some patients may die for want of a drug costing more than £30k per life year (or more, given the end of life adjustment). But it costs at least £25k a year to keep someone in nursing home care, where their quality of life is clearly well below one whole year equivalent or one QALY. Why do we simply not allow such people to die? The answer is presumably that we find it unacceptable to withdraw care from people but acceptable to withdraw expensive drugs from people. It also means that we may be spending more to extend the life of a physically and mentally frail person than of a person who would lead a normal life if only they could get the drugs. As an economist, I think there has to be a limit on what we spend on one person, wherever that is set. Ideally I would like it set in some democratic way but that will always be difficult so the next best is to be transparent. But whatever the limit, surely it should apply to nursing home care as much as to expensive medicines. Happy to discuss further.

Sybil Ruscoe

Dear Adam,

You may be interested in the work of the former England footballer, Geoff Thomas, who is trying to find a solution to the rationing of blood cancer drugs on the NHS.
www.geoffthomasfoundation.com

Geoff started his Foundation after he survived leukaemia. He is trying to set up a Therapy Acceleration Programme (TAP).

The GTF believes that more has to be done to get new drugs from the lab bench to the hospital bedside.

The UK has spent billions on medical and scientific research and new, life-saving drugs exist to save or prolong lives.

I hope you will find Geoff's website of interest.

Regards, Sybil Ruscoe

Prof Keith Willison

Dear Mr Wishart
I thought your documentary The Price of Life showed excellent balance between the competing demands of terminally ill cancer patients, NHS budgets and medical pioneers who design these new treatments. You managed to convey emotional issues without being mawkish and your editing of the NICE committee at work was a tour de force. I only wish our politicians could debate these issues openly with the public but with so many Health ministers serving for short periods of office it is not a prospect. This is the grand debate for the Western world in the coming decades: extending life for an ageing population at any cost versus healthcare and health education for future generations. Read Anatole Kaletsky in the Times online today 'Healthcare, not bailouts, could break America'- as President Obama begins the discussion in the US.
http://www.timesonline.co.uk/tol/comment/columnists/anatole_kaletsky/article6523512.ece
Congratulations
Keith Willison

Amanda

HI,

Watched the programme last night, and thought you presented a well balanced view. Sadly the NHS does not have the endless pot of money we'd all like it to have, and so tough decisions have to be made.

it's interesting to read here that no one feels the issue is with the drug companies. Surely if they could be challenged huge cost savings could me made. Interestingly the NHS are also unable to challenge the price of equipment - another disgrace that's costing millions.

Could you perhaps do a follow up piece looking at this in more detail- challenging the Goverment to look at this, rather than leave the NHS in a no-win situation?

Thanks, Amanda

Ruth Bright

A great documentary.

NICE oppose universal screening of pregnant women for Group B Streptococcus - such a screening programme would have saved my daughter from life-threatening illness as a newborn. In that sense I have been a 'victim' of NICE and yet I appreciate your balanced and human portrayal of the committee and its Chair.

Daphne Austin

Dear Mr Wishart,

Congratulations on this most important documentary. You have most sensitively and ably presented some of the complexities of priority setting. I am sure that I am not alone, from amongst the commissioning community, for being grateful for this work and hoping that this contributes to a change in the level and nature of public debate. The Committee at NICE and the other participants should also be thanked for providing you with the opportunity to make this programme.

It is important to differentiate between absolute spend per person, value for money and (given we cannot afford everything) relative value of different cost-effective healthcare interventions.

When I looked at it about 8 years ago the average healthcare costs per person over the course of 75 years was £90,000. The majority of people however used about £40,000 over this time. Obviously those with prolonged critical illness and those with complex cares needs needed higher levels of funding. Around that time it was reported in the press that one person had £2 million of blood products administrated to them over a weekend. Quite how one would set absolute limits is almost an impossible question. However in a totally public funded system – it is unlikely that spending £300,000 per patient per annum, which the NHS does on some drugs now, is sustainable. (The NHS having paid it has therefore also sent a message to the drug industry that this is a price the market will bear).

I believe that the public should be more engaged in priority setting. To ask the public what limit should be set on cost-effectiveness, however, is meaningless. The question is what can Society afford or what is it willing to pay?

The recent decision to place greater value on end of life treatments (and therefore also on this patient group) has not been accompanied by a tax rise. In a system with a fixed budget, there should have been a responding reduction in the threshold for all other patient groups. It should not have remained at £30k. This of course assumes that £30,000 per QALY is the current affordable level (i.e. the level at which we know that any healthcare that has a cost-effectiveness value below this level can be fully funded). Most experts think that the actual figure is more likely to be £18,000 or even lower. If this is the case then this raises some serious questions for both the NHS and NICE.

Much criticism is made of the QALY by patient groups and Industry. PCTs have their own concerns, not the least of which is given that we suspect the current cost-effectiveness threshold level is unaffordable it seems dubious practice to make the QALY the basis of your decision. Linked to this is the fact the QALY is neutral about how the year is achieved (that is the whole point of it). 1 QALY can therefore be made up of 365 people each gaining one day of extra life or 1 person gaining a year. Even if the cost per QALY were the same in each case PCTs would value these treatments quite differently and also the states in-between. As the American commentator said in your documentary - a cancer drug that gave one year of life is a REALLY good cancer drug. Most do not so for most drugs the QALY is actually made up of many patients getting a few weeks extra of life.

As Sophia Christie pointed, the decision facing PCT is to make a choice between possibly 120+ options. Given that for most of these choices the QALY is not known decisions are made as a result of complex trade-offs. (I am sure that it is theoretically possible to arrive at a QALY for preventing a Baby P case but I doubt if anyone has the information to construct it or the resources to do it). What is so interesting (and reassuring) to PCTs is when priority setting is presented to clinicians, patient and public representatives as a choice between different treatments and services (rather than should we fund this drug or not?) they make very similar decisions to the PCTs themselves. (This is perhaps not surprising because commissioners are after all also users of NHS care, carers, parents, citizens and taxpayers). If the public were therefore to be engaged in the actual decisions that faced a PCT it is likely that there may be less conflict than might be expected.

Finally, it would be good if there was wider recognition that PCTs (and therefore the populations they serve) do not all get funded to the level they should (colloquially known as their ‘fair share’). Some are below target and others above it. This seems a pretty fundamental piece of information for any debate about resource allocation and postcode variations and yet it is rarely mentioned. If the PCT which is most under target were to be funded to the same level as the PCT over target it would have £56 million more to spend on healthcare. The relatively funding levels of PCT can be found at the link below:

http://www.dh.gov.uk/en/Managingyourorganisation/Financeandplanning/Allocations/index.htm


Sinead Bourke

Dear Adam
Your documentary was excellent and easily understandable to the general public. I am well aware of these issues as my job is to apply for funding for high cost drugs for patients. It's true as we all know that the NHS cannot afford everything,however, part of my job is tracking down overseas patients and establishing their eligibility for free NHS care. There are hundreds of thousands of "students" admitted to the UK to study. The department of health guidelines state that if an overseas student is on a course of 6 months or longer they qualify (as do their six wives and 20 kids - all issued with student-dependent visas) A person issued with a "Highly skilled" visa does not have to have a job to get one -why???? what have they contributed to the NHS - nothing - these people study here(half of whom can't speak English properly so how can they do a Masters? They qualify and leave. This really is a huge area that I think you should look at - we could save millions.

An economist

Dear Adam,

I watched the documentary with interest, and thought it remarkably balanced. I think you did a very good job of showing the complex decisions that do have to be made

Ultimately if NICE don't make them it will be done at the PCT or hospital level. Better to make them rationally and explicitly at the national level, with the best available evidence.

I also say this as an economist in industry for a large pharma company, who is responsible for making submissions to NICE. While they may be a hurdle for the pharma industry (Celgene did themselves no favours with the way you were treated here), but as a tax payer I think NICE are an excellent organisation who do a fantastic but very difficult job.

I'd also like to point out I disagree with the end of life criteria, as it drives us further away from value for money - the QALY calculation is about capacity to benefit. Expensive cancer treatment can be cost effective, just as programs for children can be cost ineffective, ultimately it is about is it worth the investment? The value of extending life is built in.

Anyway congratulations on an excellent piece of work, and I hope you do a sequel. Either way I will look out for your name in future.

A Barnett

Well done on the documentary. However, if NICE were to licence or sanction a cheap generic drug in use as Low Dose Naltrexone, many cancers and many other nasty diseases could be cheaply and safely managed. This would result in billions of pounds being freed up instead of spent on expensive drugs which as you say are toxic and don't work much anyhow. We are petitioning the government to fix this problem with generic drugs that find new uses, ie, they are cheap so drug companies cannot invest in them so they sit on the shelf when they can be saving lives and money instead.
The petition can be reached via the LDNNow website, lets get the emphasis of spending on the NHS away from expensive drugs where alternatives can be found, like LDN. There are other generics too with grewat new uses, but Naltrexone is so important in terms of lives and economies that we need to be ashamed as humans of our neglect of it.

alain

Dear Adam,
I am leaving in Paris and being told that your documentary on price of life is very good.
It seems difficult to see if you are leaving abroad UK.
How could I leagally see this documentary.
Thank you in advance.
Regards
alain

Graham Dawes

Watched ‘The Price of Life’ on iPlayer having heard reviews of it (which I’d recorded) after its showing.

Was impressed by how you put the film together and the balanced view that emerged as you pursued your investigation.

However, there are disadvantages to the film form in such a case. The most obvious was the ending. In filmic terms, I could see that it made sense. After all, Julia had been one of the central characters of the film. But her death seemed to relate to a different issue - that of the speed at which NICE decisions are implemented (if we put aside the issue of the immediate medical blunder). The scenes with her grieving husband and daughter skewed the fine balance of your summing up. It took us back to our primitive emotional reaction that everybody should have everything that would give them even an extra day of life.

There are generic problems with documentaries. For one, you only have what people say and, in many cases, what they say will be less articulate than it might have been if written up (by someone else, if necessary). For another, the visual is so compelling that in cutting from one scene to another we are carried along, and lose that beat or two of pause which allows what we have just heard to ‘land’ in our consciousness. So, even in a film like yours, where a number of very pertinent points were made, and made well, the end experience tends to be impressionistic.

Gordon Hill

Hi Adam
I am a Lecturer in Nursing at Edinburgh Napier University and found your programme very interesting. I teach Research and Evidence Based Practice and am sure that your programme would give our students an excellent insight into the issues pertaining to and the process of approval of medicines.
Is there any way that we could use the programme as a teaching aid? I recorded the programme and could embed it into our secure Virtual learning evironment that the students access. We have done this previously with really succesful results in terms of student engagement.
I emailed the BBC 'contact us' page, but I have't heard anything back.
Many thanks
Gordon

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