Brussels & the value of 3 extra months….

Last Thursday I had the odd experience of travelling to Brussels with a suitcase crammed full of bags of Salted Caramel Florenteenies and a small rucksack with 4 days worth of clothes! The reason – the MPNE (Melanoma Patient Network Europe) conference. I had been asked to provide treats for all the attendees and thank-you gifts for the helpers and speakers plus to do a short talk putting forward the patient’s view of why 3 additional months of life is worth something.

As always, the conference was beautifully organised – fascinating speakers, great discussions and some really lovely friends. One of the odd silver-linings of melanoma has been the friends I’ve made along the way and the conference is always a good time to catch up with them and to enjoy the easy short-hand of other people who just understand what it’s like to be a melanoma patient.

The value of having patient talks at these conferences is they serve as a real reminder to the other stakeholders and influencers as to what the point of it all is – the patient is central to the ethos of MPNE. If the work being done doesn’t ultimately improve the situation for patients then it’s the wrong work. With this in mind – I put together my talk and ended up writing something that was far more personal and in the end emotional than I’d intended but it turned out that when I began to think about the value of 3 months it was a subject I felt passionate about. Instead of attempting to paraphrase – I’ll do as I did after the Bristol conference and here it is – word for word.

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3 months are not worth it you say?

Back in January I attended a workshop organised by NICE focusing on patient engagement. NICE stands for The National Institute for Health and Care Excellence. It is an independent UK-based organisation which decides which drugs and treatments are made available on the NHS in England and Wales. Until this point I’d always thought of it as a bit of a baddy as so much of the press we see focuses on the drugs that don’t get approved.

I still have my reservations but it was a fascinating day and very useful to learn a little more about the ethos of NICE and how much they try and do the best for patients. During the afternoon they ran a session in which we were presented with a case study and asked, in small groups, to decide whether we would or wouldn’t approve the case study drug.

The drug was for a cancer caused by exposure to asbestos (mesothelioma). It generally presents in people aged about 60 to 80 and because it’s slow growing – it often isn’t diagnosed until it’s fairly advanced. A drug was developed, that in conjunction with chemotherapy, could potentially provide an additional 3 months of life and for some of the fitter patients that could even extend to an extra 5 months. As is so often the case, the drug was expensive and far exceeded the usual NICE allowance – it also came with some side effects. There were other considerations – this is a cancer this ought to be eradicated within about 15 years simply because the generation who were exposed to asbestos are dying out and so if it were approved it would be for a finite period.

So, we, the audience were asked whether we’d approve the drug. To me it was a total no-brainer. The side effects weren’t really that bad – nothing compared to Ipi/Nivolumab and it could offer 3 possibly 5 months of life.

My feelings were that

  • It was an entirely hypothetical situation we didn’t have to balance books and deal with the implications of what approving this drug might mean for other drugs we were just being asked whether 3 months was worth something.
  • The side effects really didn’t sound that bad and in my opinion the ideal would be to present the information to the patient and let them decide whether they were willing to take the risk
  • Finally – I come back to the fact that 3 months is 3 months!

To my surprise the rest of my group didn’t automatically agree. What was utterly black and white to me came in various shades of grey to them. There were several arguments.

  • The cost issue – this was not a cost effective use of health spending.
  • The ethical argument – it is wrong to foist treatments on to patients who are dying and treatment by it’s very nature would negatively effect quality of life – and
  • 3 months really wasn’t very long.

Eventually we as a group did vote in favour of approval but were then told NICE had in fact turned the drug down and it was only approved after a subsequent appeal. The basis of the appeal was related to the role of societal responsibility, as it was a cancer caused by people unknowingly being exposed to a toxic material.

The experience led me to think a lot about what I consider to be the misconceptions about the value of 3 months.

Firstly, 3 months offers hope and anyone with a terminal diagnosis knows how essential hope can be both for patients and for their families. It’s what stops you taking to your bed and giving up and what makes you get up every morning. That extra 3 months could provide just enough time for a new drug or a new trial and those 3 months might then extend to 6 months, a year, who knows. The role of immunotherapy within melanoma treatment has totally altered the treatment landscape and it’s still too early to know it’s full potential.

One of the main arguments raised during the discussion was that it was simply wrong to push additional treatments on to sick and vulnerable patients and that treatment inevitably impacted poorly on quality of life. The potential side effects were seen as a serious issue.

I objected to this on several grounds.

  • Surely this is a decision a patient – when presented with the facts – is capable of making. There seems to exist a belief that if you have only 3 months to live you somehow also lack the mental capability to make rational decisions about your treatment.
  • I think that people ‘on the outside’ assume that dying of cancer, without intervention, is somehow less dreadful than receiving cancer treatment. Whilst some treatments do come with hideous side effects so does cancer. Surely this is a decision a patient should be presented with?

A major part of the argument is obviously financial. What’s the point on spending what is seen as a disproportionate amount on end of life care. A view that’s much easier to maintain when your life is not under threat and when you conjure up images of end of life you imagine people in their 80s or 90s coming to a more natural end. Thankfully there are some provisions put in place to help balance the discrepancies in cost benefit frameworks with regard to end of life care.

In the end the workshop left me feeling frustrated that people who just don’t understand make these decisions. Until you find yourself in a situation when it is very likely you have very little time left – it’s impossible to know how you’ll feel and how valuable time will become.

I read a really extraordinary book recently by Mary Elizabeth Williams called – A Series of Catastrophes and Miracles. It’s a true account of a woman in New York diagnosed with melanoma who embarked, by a stroke of luck, on the phase one ipi/Nivolumab trial in 2011. She was in her mid 40s and has two young girls.

Just prior to starting treatment she says: –

“I want to stay. Don’t make me leave. Not now, not yet. The school year has barely started and I’m scared I won’t see the end of it. Will I see the cherry blossoms in the Botanic Garden in the spring? Will I get to Christmas? Will I make it even to my birthday? Everything I thought about the futility of treatments that might only give people who have a fatal disease just a few more months – everything I believed about the pointlessness of it – right now, I take it back. I may well have only a few months, but I want those months very much. If I could do something to get a few more months on top of that, I’d take them too.”

This resonated very strongly with me and back in September 2013 – when my world was turned upside down by being told that I had months not years I found myself making bargains in my head – looking to milestones that were a month, two months ahead and hoping, that if I wasn’t too greedy – if I didn’t look too far ahead then perhaps I’d be allowed another Christmas with my family. I remember very clearly fearing that I wouldn’t see my boys reach the end of their current school years, that I wouldn’t see my youngest turn 6, or reach my 20 year anniversary with my husband – both milestones due in the Spring of 2014.

Due to a combination of being proactive about my care and getting lucky with treatment, I have seen those dates and many more but for that time, that 3 months from late September 2013 until Christmas 2013 I really did believe that might be all I would get.

It gave me time to sort out finances, make lists, discuss what I wanted for my children, what I did and didn’t want in terms of my funeral. The time was so precious and I was clearly very ill but during that period I spent lots of time with my friends and my family and most especially with my husband and my boys. Looking back at the pictures of that period – I can see lots of really precious and happy moments –

Just days after the diagnosis my sister and I walked the Shine night time marathon. It was an extraordinarily emotional night but it was an absolute highlight in my life.

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She and I also I established our reputation at the hospital for being extremely silly. My first treatment was on 31st October and due to the trial – the nurses had to take comedy amounts of blood. My sister and I became quite convinced it was some kind of Halloween prank.

clairehalloween

In mid-November – my husband and my boys and I were treated to a lovely weekend away in a beautiful hotel in Suffolk. That weekend I hit my lowest point as the car journey left me feeling utterly broken and I was barely able to make it up to my room. However, the combination of a cocktail of painkillers, and what I believe to be the turning point when the treatment was just beginning to work, the next couple of days were extremely special – lovely walks, family meals and precious time with my boys.

And finally, I genuinely thought that Christmas was likely to be my last but it couldn’t have been more perfect or more beautiful.

I have obviously been extremely lucky as my 3 months turned into 6 months, a year, two years and now right now it’s been 3 and half years but I believe passionately that even if 3 months is just 3 months – that is not something that should easily dismissed – that alone is phenomenally valuable, precious and important.

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Brussels & the value of 3 extra months….

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