Guest post: "The life-prolonging cancer drug I need is being withdrawn from the NHS"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

[passthewineplz]

Signed and shared on FB

[ShoutOutToMyEx]

Tonight of all nights, I think this needs to be at the top of Active. Bumping again

[BearGryllsHasaBigRope]

Signed

[Izzy24]

Signed.

[LuckyBitches]

Signed xxx

[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.

[expatinscotland]

'If I was living anywhere else in Europe or in America, I’d be able to raise my kids, but not here.

Sadly, that is not true of America. If your insurance provider did not cover the treatment, and many do not because they are considered 'experimental' or Medicaid/Medicare did not, then you would have to privately fundraise to be treated. And even if your provider covered it, your copays could amount to tens of thousands of dollars and again, you'd have to privately raise funds to cover it. Many, many treatments are not covered by insurers or Medicaid/Medicare and/or come with enormous co-pays.

In the UK, many treatments for paediatric cancer are not provided by the NHS and families must raise tens, sometimes hundreds, of thousands of pounds, quickly as their child has already relapsed or has active cancer that needs prompt treatment.

The NHS is no longer funding second allogenic stem cell/bone marrow transplants, which are a common enough treatment for relapsed blood cancers.

I've signed the petition, but please, instead of grumbling about IVF and breast augmentation (which is general provided for women with serious breast asymmetry or disease or for women whose cancer treatment in childhood has prevented breast formation), continue to also privately fundraise.

[PurpleDaisies]

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.

I'm so sorry you're had to deal with breast cancer and I genuinely hope you get the treatment you need. I think this paragraph is really unwise.

Firstly, paying into the NHS "all your life" really shouldn't be the basis in which someone is treated. Many people who have never been able to work still deserve the same standard of care.

Secondly, IVF funding has been cut hugely and the criteria are strict. It's almost impossible to get endless rounds of IVF on the NHS as you suggest here. You're massively minimising the effect of infertility on people's lives. The cosmetic surgery available on the NHS is to correct serious problems such as post burns scarring, uneven breast size. Again, problems that seriously affect people's self esteem.

Please don't put funding for your drug against these important services. It's unnecessary and hurtful for those of us that have needed this sort of help, or may need it in the future.

[RosalieMarshall]

Sorry if you feel I was grumbling! I was just stating facts. I want people to have IVF. I just wont be using it. That's really all I was saying. Also the NHS is our form of health security so really saw no need for private healthcare? Not everyone has enough money to pay for the NHS through their taxes and then pay privately on top...unfortunately...

[eternalopt]

Sorry - but confused. Your op says petition closed on 24 but people still signing? Makes sense that it's closed, as the official consultation period is over now as well. Says policy isn't final until consultation finished, which also makes sense. www.nice.org.uk/news/article/kadcyla-too-expensive-for-routine-funding-on-nhs

Fingers crossed it doesn't come back for you anyway

[RosalieMarshall]

Thanks eternalopt!

Petition closed this morning and they've since edited my last paragraph to reflect that.

[Balanced01]

@PurpleDaisies

Of course people who never been able to work deserve treatment, at which point does the OP say they don't. To be fair if you pay taxes for a service which part of the money goes towards you have a right to at least question this.

Personally I think living out ways massively the inability to have children. Children are not a necessity regardless of the amount of joy they may bring to your life. But life in it's self is a much more precious commodity

You are correct that cosmetic surgery in cases like you mention for burns victims is vital and hugely important. However uneven breast size and how it may affect their self esteem! I mean seriously that pales in comparison to a life!

[Balanced01]

@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.

Other than cost which is obviously a massive factor.

The NHS can afford this however

www.dailymail.co.uk/femail/article-2364692/Josie-Cunningham-5-000-breast-implants-NHS-wants-YOU-pay-remove-them.html

[venusinscorpio]

Priscah, not really the thread is it? Did you make a mistake and post it on the wrong thread?

[PurpleDaisies]

However uneven breast size and how it may affect their self esteem! I mean seriously that pales in comparison to a life!

So you think people who have had a mastectomy due to breast cancer shouldn't have reconstructive surgery? Their life has been saved. It's only their appearance that's affected if they've got one breast not two. It isn't as simple as "life saving" is good, anything else isn't worthwhile.

OP if you want to keep the focus in the right place, you're better off not bringing IVF and cosmetic surgery into it at all. If the drug is worth the spending money on in a cash strapped NHS, make a positive campaign on its merits. I hope things work out for you.

[PurpleDaisies]

Sorry, rogue "the" in the penultimate sentence there.

Prischa I've reported you for either total incompetence in posting on the wrong thread or a huge lack of decency in your survey request on this thread about cancer.

[Balanced01]

@PurpleDaisies

Firstly you mentioned nothing about mastectomies just uneven breasts, two completely different things and of course mastectomy patients should be given reconstructive surgery on the NHS.

Also at what point did I ever say or even imply that anything else isn't worth it?

[PurpleDaisies]

balanced you stated that since uneven breasts only affected someone's self esteem surgery shouldn't be available on the NHS. A mastectomy leaves someone with uneven breasts so I was wondering what your logic was for funding one not the other. In case you haven't seen it, the criteria for getting and NHS funded operation is here...

Occasionally, it [breast surgery] may be provided on the NHS for psychological or other health reasons. For example, the NHS might pay for:
breast implants if a woman's breasts are severely underdeveloped or asymmetrical, and it's clear this is causing her significant psychological distress

Anyway, this is not what the thread should be about.

mummyrussia you've clearly missed my point. The op is campaigning for the drug to be available on the NHS, which is great. It is expensive so it needs to be shown to be cost effective. The best way for the campaign to be successful is to show that the drug is brilliant and significantly improves someone's quality or quantity of life. The final decision hasn't been made yet and I hope NICE do decide to approve the drug.

[expatinscotland]

Breast augmentation is also sometimes performed on young women whose cancer treatment in childhood prevented their breast tissue from growing in adulthood. Sometimes these women also receive fertility treatment because again, many cancer treatments in childhood are known to cause fertility problems. My daughter may well have been one of these women had she survived her cancer. I agree with Purple.

[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). So the actual cost of a QALY could run into hundreds of thousands. These drugs are pretty much never the miracle they can be presented as being and there isn't an unending pot of money.

Having said that I fully understand why you personally are desperate for it, just as I would be in your situation,

[Balanced01]

@PurpleDaisies

At what point did I state funding shouldn't be available to people with uneven breasts on the NHS?! Quite clearly I didn't, thats the third time I have to correct your incorrect assumptions! I merely made the point that life is more important than someones self esteem, maybe not in today's narcissistic society sadly it would seem.

Would this be following NHS guidelines?

//www.dailymail.co.uk/femail/article-2364692/Josie-Cunningham-5-000-breast-implants-NHS-wants-YOU-pay-remove-them.html

@expatinscotland

I 100% agree with you and this is a vital and necessary service on the NHS.

[Samanth1503]

I'm too in a similar situation .Never been out of work since I was 17, 26 yrs ago so paid contributions on full time pay for that time. Diagnosed 2yrs ago with 2 different breast cancers one in each with secondaries in my lungs . had intensive chemo for 6 months, surgery then Kadcyla. Healthy lifestyle before and continue to as much as I can. I too found supplements which I'm sure have helped and I've been back at work part time for a year and get an extra day off during chemo week. Yes I suffer fatigue which is why I can't t do full time, and manageable minor sides affects, but apart from that I feel "normal". I have an active life and with Kadcyla I feel I'll have at least 10 years, although every anniversary I mentally put the counter back to at least 10years :) Kadcyla is my lifeline, it's my hope and life without hope is very dark & scary. I was disappointed that the petition didn't get more signatures but we signed & did lots of sharing and hopefully the compromise will be financial instead of life. Well done to all who got involved. Best wishes Risalie & to all other patients. Fingers crossed for a positive outcome xx