Guest post: "The life-prolonging cancer drug I need is being withdrawn from the NHS"

[KiranMumsnet]

For the last 15 years I’ve been paying into the NHS through my taxes. I wanted health security, so I didn’t mind. I never thought my illness would be so expensive that the NHS wouldn’t be there for me. I never thought I’d feel guilty for the amount I was costing others to stay alive.

Two years ago, I found a lump in my breast while breastfeeding. The father of my children assured me it was probably nothing to worry about. My GP said the same. Then I got the referral letter to a hospital in London, and it said my appointment was in the Cancer Centre. I can still feel the chill that went through my body when reading those words. Surely it couldn’t happen to me.

I was a young mum with two small children. I was a hard worker, maintaining a career as a writer while spending quality time with my kids. I exercised and ate well.

But it did happen to me. It was one the most aggressive kinds of active breast cancer, known as HER2+. It was also stage four - meaning incurable, inoperable, terminal. The registrar delivering the news said my life expectancy was only another two to five years.

Then a hospital consultant told me there was hope I could live longer. Beyond chemo, there were targeted drugs that could keep me alive for years. The first drug combination was Herceptin and Pertuzamab. Then once my body becomes resistant to those, I’d move on to Kadcyla. Then once that stops working, there’s Tykerb. This assurance cushioned the blow ever so slightly. Maybe with three lines of treatment, I’d be able to stay alive long enough to see my kids become teenagers.

I did chemo. I fasted two days before and two days after to get the maximum benefit. I vomited. A lot. I lost my hair. And I did it while working and being a mum to my kids. I also spent hours a day cooking specialised meals that would feed me without feeding my cancer. After work, I juggled laundry, shopping, exercise and tons of research on off-label medicines and supplements. I got through it. And I made it to remission.

Now I have Herceptin and Pertuzamab every three weeks. I've survived two years and I feel pretty normal apart from all the pills I take. The death sentence the doctors gave me at the beginning of this journey is giving way to increased hope, but it still hangs over me.

That’s mainly because the National Institute for Care Excellence (NICE) withdrew Tykerb from the NHS last year. Now they have removed Kadcyla. If my cancer comes back, as my doctors have warned me it will, there will be nothing more the NHS can do. If I was living anywhere else in Europe or in America, I’d be able to raise my kids, but not here. Here, it’s goodbye.

I've sought a special vaccine treatment in Germany to try to improve my chances of long-term survival. If the vaccine works, I may not need Kadcyla. I try not to think of what will happen if it doesn’t.

NICE has taken away Kadcyla because of cost. The manufacturer, Roche, has lowered the price but it’s not enough for NICE. At the moment the drug costs around £38,000 for six months of treatment. That’s more than standard chemo, but it's not as outrageous as it may sound.

The NHS covers numerous expenses that aren't life-saving: multiple rounds of IVF at around £5000 each. Over £7000 for a breast augmentation. It will cover a nose job, a chin implant, a tummy tuck, and a face lift. I've paid into the NHS all my working life, and I don't expect it to cover anything extraneous. I just expect it to be there for me when it's life or death.

We are petitioning NICE and Roche to find a compromise to keep Kadcyla available. On 23 January the petition closed, with over 115,000 signatures – a clear demonstration of the strength of public feeling about Kadcyla. Myself and other women in the UK who have put their trust in the NHS and now find themselves being left high and dry need them to reach an agreement.

[ChippingInLovesWoollyHugs]

I hope something changes with the funding (God knows what, but something!) and that any & all appropriate treatment is available on the NHS should you need it 💐 Bastard cancer.

Some people could start an argument in an empty phone box, try not to let it upset you.

[RosalieMarshall]

Hi all,

Please let's not get sidetracked form the real issue, which is saving a life prolonging drug. Kadcyla has no side effects and has kept women alive for 10+ years in some cases (I met a women yesterday who had been on it that long when handing in the petition). This isn't a debate about what the NHS should pay for. This is saying the NHS is our health security system and when you pay into it as such, you have expectations. My expectation is that the system should definitely be here for us in life and death situations, especially when a drug has demonstrated such amazing promise and has already been available on the NHS for years. That's not saying I don't think women shouldn't have IVF, or shouldn't have breast surgery. At no point do I say that. I completely support both. Arguing about stuff I haven't said is just silly.

Also on the point about getting Kadcyla abroad. The point I'm making is that you can access the drug in other countries. Sometimes that involves being part of the relevant health security system. Like in the States, many women who have Obamacare are on Kadcyla. I've looked into it. Unfortunately this is now changing as the future of Obamacare looks uncertain. I'm afraid I can't comment on every single country as that isn't the point of this article, or in my view, the thread of comments.

Yes, the NHS has removed lots of treatments. Of course when I hear stories about them, I feel very sad, especially when they involve children. If I was bigger and stronger, I'd be campaigning for many more cases. This blog though is a plea to keep Kadcyla on the NHS. There's no wider angle to it. I want to be around to bring up my kids, and I want many other women to be able to do the same.

If you want to help this cause, please email your MP to attend the debate tomorrow in Parliament. That will really help. That's now all we can really do. Fingers crossed, and thanks for all the messages of support. I'm afraid I won't be responding to further comments.

All the best, Rosalie x

[Balanced01]

@ blaeberry

The thing is it isn't that £38000 will save your life; that money pays for a treatment which may, in some women but not all, prolong their life for a while which may be as little as a couple of months and may cause serious side effects regardless of impact on life expectancy. (I haven't studied this drug so don't know).

You haven't studied the drug but yet you have made two massive statements based on by your own admission no evidence at all!

In the OP's case the drug in question could extend life by many many years not months.

Try doing some research first before making sweeping statements

[Samanth1503]

Thank you Rosalie. I've also met a lady that's been on it for 10 yrs and that's one if the stats that isn't published often. Yes it might be a couple of months for some but it's years for many. Keep up the good work and don't forget to be kind to yourself xx

[Notinmybackyard]

Signed and shared on facebook. My sister is currently going through chemotherapy for aggressive breast cancer. She is 68 and hopefully after her chemo, radiotherapy and herception injections she will live for another 10/15 years as her consultant has advised her.

It makes me so sad to hear stories like Rosalies. While I appreciate the NHS can't pay for drugs for all illnesses, I think that it is cruel to be denied the drugs that are available to others in Europe and the US that are shown to be successful.

My husband has just finished two years of NHS treatment for Non Hodgkin's Lymphoma and his treatment was excellent. We were told that the drugs were very expensive. He was only 58 when diagnosed. Hopefully he will have another 10/15 years due to his treatment. His illness was a huge shock as both his parents lived to 85 with very little ill health.

[blaeberry]

balanced I said MAY repeatedly and also clearly stated I didn't know about this drug. I was trying to make a point that it is not a simple calculation. But ok it might have been interpreted wrong.

However, I have now looked it up and the incremental cost-effectiveness ratio for Kadcyla is around £167,000 per QALY (quality adjusted life year - so cost for each extra year of good quality life). Now I do think my life is worth that much but with a finite supply of money should that be spent on one person or to give six people extra QALY through cheaper treatments? Money will always be finite so these decisions will always be have to be made at some point.

[HelenaDove]

Bollocks Balanced. Its nothing to do with narcissism. And everything to do with the expectations placed on how women should look which can affect womens mental health.

I remember a thread where the OPs partner asked her to cover her mastectomy scar with a babydoll nightie because it was putting him off during sex.

Ive seen a couple of posts from ppl on this site saying that breast reconstructions after cancer HAVE been stopped in some areas due to cost.

[Balanced01]

@ HelanDove

You quite clearly didn't read my comment properly.

On a side note you don't have to read into false expectations.

My narcissism comment was a general comment on how some people care so much about looks and likes. Hence the link to the women who had a boob job on the NHS because she wanted to be a glamour model.

I was in now way implying that mastectomy patients or any other reconstructive patients were in anyway narcissistic. Reconstructions should never be stopped due cost, they are essential.

[Ellapaella]

Maybe this thread isn't the place to debate whether someone's life is worth a certain amount - either sign the petition or don't. If you want a debate about the ethical issues of providing expensive cancer treatment on The NHS then maybe you could start your own thread - the OP is a young Mum who may not get to see her young children grow up and so is understandably trying to gain support in her desperate fight for life. Have some tact and common decency ffs.

[blaeberry]

The OP herself bought up the issue of cost and the NHS is withdrawing the drug on the basis of cost. Yes, you can try to argue for it on the basis of emotion but even them it is useful to know why it is bring withdrawn and what you are fighting against rather than simply saying 'because it would be a nice thing to do for this person' (despite the opportunity cost). There is a scheme where ' last resort' drugs offered even though they cost more. Perhaps you need to campaign for the manufacturer to offer the drug to the NHS at a lower cost to meet these criteria? In this country we think it is distasteful to mix money and health provision. Unfortunately it has to be.

[Samanth1503]

Well said @ellapaella

[blaeberry]

Just realised I maybe assuming some knowledge here: QALYs are what NICE use to make decisions about treatment, not the cost per treatment, which is why I mentioned them. It used to be that £30,000 per QALY was the rough cut-off for NICE (ten years ago) but I assume this must have gone up a bit.

My point about feeling my life was worth the amount given is I also feel other's lives are worth more than that. Life feels too precious to value. I have immense sympathy for the OP. But with a finite amount of money it should be used to maximise everyone's life. Unfortunately when you see waste and questionable use of resources (e.g. Homeopathic hospital!!) it makes it doubly hard when financial decisions affect you.

[Thingsbrightbeautiful]

Signed

[venusinscorpio]

I agree with ellapaella. What are you trying to do here blaeberry? Are you trying to persuade people not to sign the petition? Are you trying to tell the OP she shouldn't have started it unless she can justify it with a cost/benefits analysis? I don't really see what point there is to your posts otherwise. I find them pretty crass on this thread. As ella said, maybe you should take it elsewhere.

[Venusflytwat]

Absolutely agree with ellapaella and venusinscorpio .

There is a time and a place for this discussion but this thread about a real woman's battle to keep her life saving medication is not it.

Have some decency and start a discussion thread if you want to but let this one stand in the spirit of the OP for pity's fucking sake.

[stopfuckingshoutingatme]

24/01/2017 14:19 MadisonMontgomery

There's nothing stopping you from choosing private healthcare. I am very sorry you're ill, but unfortunately the NHS can't afford to pay for everything

Well apart from the $5000 a year premium

OP I will sign tomorrow - my father received a very expensive cancer treatment twice - and it prolonged his life . Wishing you the best

By the way I am one of the first people to question NHS spending and I think you are unquestionably worthy and bless you all

[Flowersandbirds]

I'm so sorry to hear about this, it's such a difficult position for you and your family. I would just say that it is very rarely true that the NHS will find multiple rounds of IVF. The criteria are very strict and the majority of people don't meet them. For example if you or your partner already have a child, you are over 35, your egg reserve is low etc Even then very many trusts only offer one round. Many women just don't have the financial option of fertility treatment. I fully support your cause, i just don't think your comparisons strengthen your totally valid argument.

[CantChoose]

I'm so sorry you've had to go through this.
I can't imagine how it feels to have been told a treatment is available the have that hope taken away, it's cruel.
As an HCP I do understand the finding decisions and in general think they are fair. But if it was me or my loved one in your situation I'm sure I'd feel the same as you.
One thing that worries me is you say it has no side effects. It is a cytotoxic drug with many potential side effects, some of which are serious. If your medical team have told you otherwise you need to rediscuss it.

[luckylorca]

.. ok, 3 important bits of advice here:

1). Try to get your story on a programme like This Morning. A woman who couldn't afford IVF did and an anonymous donor (who turned out to be George Michael!) paid it all for her! So get your story out there via tv, radio, Facebook, the lot!

2). If you google Cancer Research and Aspirin, you will see that aspirin has been proven to stop cancer from spreading

3). Ditto for eating a portion of cooked Brussels sprouts before every meal. It sounds weird, but, if it's proven to work, as Nike say, JUST DO IT!

Lots of love and luck, OP. Focus on the positive. (That, in itself, has been proven, time and time again, to be a life-saver!)


Xxx