Every night I swallow two pills to control my advanced, recurrent ovarian cancer. The cancer I am told is now incurable. The pills bring with them an arsenal of side effects; I am nauseous, fatigued, prone to infections. I’m not going to get better and I’m definitely not going to ‘win’ the war against cancer. And yet, I carry on taking the pills. And I carry on taking them because they are working – the cancer has stablilised and is likely to stay stable for many months, maybe longer. 6 months in, the side effects are becoming relatively manageable. And this gives me hope.
Last month NICE announced that the drug I am taking, Niraparib, will not be made available on the NHS. They have referred the application to the Cancer Drugs Fund. According to NICE there are 850 women at the moment in the UK who could be treated with Niraparib. Instead, there are a handful of women who, like me, were fortunate enough to be referred to an expanded access scheme which was open for a few weeks in the summer. The remainder must watch, wait, endure further rounds of chemotherapy which may or may not be effective. According to NICE the drug is not cost effective – cost effectiveness measured by a formula called QALY (quality of life years). Although the drug is proven to keep cancer stable and substantially prolong the period before further invasive IV chemo is needed, it is not yet proven to prolong survival. So the formula says no to funding. They need more 'data' (women living or dying) before the formula requirements for NHS funding are met. But how does this formula relate to women’s real lives?
When I was first diagnosed with advanced ovarian cancer in 2015, my first words were ‘but I’ve got children!’ They were 10 and 14 at the time. I was terrified of the effect that my illness and treatment would have on them. The survival statistics were shockingly low. The children’s resilience was incredible - through the massive surgery, the complications, the life events missed through months spent in hospital, the debilitating chemo. When the cancer recurred a year later that resilience was severely tested. The chemo was harsher and even more debilitating and this time there was no remission. The impact on the children’s emotional wellbeing was huge, as it was on my husband and my 84 year old mum. Hope seemed in short supply.
But since September, I have been taking Niraparib. So, although I am in treatment for my cancer, I am not in hospital. I am not subject to the unpredictable, rollercoaster troughs of IV chemo or the cumulative build up of side effects. I am at home, stable, safe. I am there with my older daughter as she goes through her A levels and university applications. I am there with my younger as she navigates adolescence. I’m not physically well, but I’m present. We can make plans – short term plans yes, but plans none the less. I hope and believe that these months will stand my children in good stead far, far into the future.
And yet, for NICE, this time of stability does not represent value for money. NICE needs to know that my life will be prolonged, however poor that life might be. Their formula does not seem to allow for the short or long term costs of emotional wellbeing, trauma, depression, anxiety, childhood interrupted. To me, it is not the quantity of life before I die, but the quality of that life, that matters most. Hope, if not for long life, for the quality of the present moment. And the moment after that. Hope for my children. And that’s invaluable, and I believe it should be the entitlement of all women courageously living with this devastating illness. Theres a terrible flaw in a funding formula that requires more women to die before there is sufficient ‘data’ to meet its requirements.
Elizabeth e x
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Elizabethe
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Hi Elizabeth. Beautifully put. I agree wholeheartedly with Linda, please pass this to anyone you can think of, particularly your MP, NICE HQ. Maybe we should think about getting a petition up? Kathy xx
This sounds worth fighting for, if you have the strength and energy. Your post is so well written that you should send a version to your MP (maybe a bit shorter!).
I had the benefit of Avastin from the Drug Fund and I would have been very upset if I couldn't have it. I know these drugs are expensive and the NHS is stretched financially but it is our lives we are fighting for, not just statistics etc.
I hope you can find a way to stay on Niraparab and I wish I knew a way.
Eloquently written, I could feel your frustrations, hope and indeed pain! As said above this needs shouting from the rooftops! Keep fighting ! With every best wish, Joanie x
You put it so well Elizabethe. I too am going through uni applications and the end of sixth form with my son. I am determined to see him actually go off to uni this autumn and I believe and hope the Rucaparib I’m on as part of the Ariel4 trial will help me do this. Good luck to your daughter in her exams and good luck to you as you continue on Niraparib. XxxxNetti
Sounds like our situations are very similar. I felt a bit less alone after reading your reply! Very good luck to you on Rucaparib and to your son - the A level/uni application is such a stressful process for them isn't it, I hate that my daughter also has my illness to live with.
I really know what you mean. We can do it and our children (even though adults really, still children to me) will have some valuable life experience ... that is what I tell myself anyway.
If you are writing to your MP and NICE there are a few research articles, easily found by searching the internet, that highlight many flaws with the QALY formula. It tries to make something subjective into something objective and fails miserably. Its based on answers to hypothetical questions from a population of people who don’t necessarily have the same perspective on life as the people for whom the drugs are for. It then tries to convert all this into a cost to compare new treatments against the current standard treatment. Again, there are flaws in this methodology too.
Basically the QALY doesnt reflect real life and it is known to be the case.
Your post is excellent. It needs to be forwarded to people that are able to take it forward to decision makers. Sally Davies? In my opinion NICE's function should be to negotiate good deals with the pharmacy companies not actually restricting their use. They can use their limited formulae as a starting negotiating point.
I was really interested by your post, when I saw the trials team at Addenbrookes, I was told that they believed as BRACA negative I would really benefit from Niraparib. The doc/rep from Astra Zenca said because I am negative it's refused for exactly the reasons you have stated. However he had a slightly different thought. They say it is because it is not proven because life expectancy is expected to remain the same with or without it, based on chemo intervention, he said that there is no trial funded without chemo intervention, however to use it until it no longer delivers should therefore be considered a saving if chemo isn't sought after as it saves on overall resources. He believes PARP are absolutely the way forward and not just because it is their drug.
He said my only chance is to pay, mega bucks, or get on a negative trial for it, but have to find my own trial and then get it applied for. This is the same with Avastin. When I was diagnosed it was available for third line only. When I was on second line they moved it to first line only. I believe it would have made all the difference, but NICE took that opportunity. Now maybe it's on the table if I can afford it or if it can help.
The point I guess here is why are we not told all the options, private and NHS, as each consultant can put forward an application on a case by case basis. It's our money in the NHS, who put these people in charge of our lives and the health and happiness of our families. Every bereavement affects a minimum of 50 people, and the cost to the NHS is huge, is that in their figures?
Love your post, keep fighting, we need a voice, a powerful one.
If you weren’t there as a prescence, it falls on your husband and elderly mother, it would be far better to help a family in a secure and caring environment in whatever way can be.
You are doing amazing, for no matter how long, you are giving your all, please don’t give up, get someone to fight your corner and look for alternatives, survival statistics are outdated and always need to be proved wrong,
Well expressed cogent post, Elizabeth. Please please can you/we see it gets wider readership/recognition? I’m not adept at social media but there may be other women here who are and can help get this important message through to those who make the life/death decisions. Jo
Fantastic post and agree with the others definitely needs to be sent to MPs and wider audience . You have totally expressed how every moment with our families and loved ones is precious and how unfair it is that the newer treatments like parbs and Avastin are not available to all . I was lucky to get Avastin for my first line but will have to pay for it if needed after a recurrence.
Perphaps the ladies at Ovacome or Ovarian Cancer Action could suggest how your excellent post could be used to help fight the cause .
So we’ll put Elizabeth. The NHS ‘measures’ have different priorities. When will someone recognise that our needs are for the best quality of life not just for us but for our families.
Wishing you best of luck.
Cheryl
Very well put expression of how frustrated we all feel at the length of time it takes to get things approved or not.
NICE hasn't actually (yet?) declined this. It's being appraised with a target publication of June this year. This is certainly later than originally planned. Your statement could be a valuable contribution to the discussion.
The issue, always, with these decisions, is the drug companies' intransigance about price. I suspect that if those negotiations proceeded more speedily, then the requirement for more evidence would be shortened!
At the moment at least, it's licensed only for use with OC and related cancers. There are only 600,000 of us world-wide, so not an enormous profit pool - unless they take the long view.
I'm fortunate to be on it via the compassionate access scheme and with no side effects, also since September.
The company is TESARO not Astra Zeneca, L-A. But his point about saving on resources is well made, I think.
Niraparib trials sub-divided participants into BRCA+ and -, and if -, what their HRD was. In particular, for - patients with problems with DNA repair, it showed progression free survival benefits rather better than other drugs to date, which tended to benefit BRCA+. In both cases, of course, this will not be true for everybody.
It didn't show improvement in overall survival, but then, from my understanding, most of the drugs don't. Or rather we don't know enough about for whom they might.
But as you so powerfully say, it's about the quality of our life here and now for whatever the time we have left.
It's undoubtedly better, if you tolerate it, than chemo. It allows to be ordinary citizens doing ordinary things, like caring for children and elderly relatives, working, volunteering in a whole range of roles, paying taxes etc etc etc thereby effecting savings elsewhere.
Ovacome, along with all the OC charities will be making representations to NICE, I expect, so perhaps they can take our arguments on board when they do.
Mac 27 good to hear you also have this drug. No side effects - that's great. Hope you continue to do well.
Ovacome have already made their representations to NICE, they were considered in the decision making process. I'm going to do another post with a bit of an update in a minute.
Thank you...I think you have written an exceptional piece of writing there. It#s well informed, logical and very truthful and honest. It is amazing to read too, that someone else feels like I do...
I am doing OK thanks... quite tired these days but being as active as I can and planning my wedding, which is now in 4 weeks
Thank you and so nice to hear from you. Please do let me know how you get on? Maybe you could Private Message me about your experience with Niraparib? xx
Thank you so much, Elizabethe, for such an outstanding post. As other ladies have said, do please forward this on to any people who might influence or add weight to support the situation. 🌷😊. Carolyn x
I Agree with every word that everybody has said. Please circulate to to all who might be able to influence the situation and also the newspapers/magazines to tell our story. Yes, an outstanding post.
Elizabethe--I do not know if there is any way to fight this but it has been determined that the PARP inhibitors do indeed prolong life in a majority of cases (or it would not have been approved in the U.S. along with two other PARPs). So how can the NHS say it has not been proven? Who are the doctors there that have the right to say something that isn't true? If anyone can prove it through publications and documentation, then I am so frustrated by the fact that you--and other patients--must take this as a given. How utterly unacceptable. I am sure others have suggested but what about your oncologist applying to the pharma company for compassionate care? I hear they are willing to supply it at times but not sure of the criteria. Assume you would be among those who would qualify. Wishing you luck-you write so eloquently about something so dysfunctional. Hoping there is a chance you can continue--pressure your oncologist--or his/her colleagues to apply as a group or some way that it wil have a speedy impact on potential suppliers of this medication.
So sorry you have to worry about this and go through this.
Hi Judy thanks for your reply. My oncologist has already applied for compassionate access - he did that over the summer and that's how I got the drug. As far as I know that will continue as long as I need it. I think that the compassionate access scheme has now closed because the drug company (Tesaro) ran out of supplies. It may be that they re-open it and more women can access it that way - hope so.
Thank you so much Elizabethe for sharing your post. You make your case so eloquently and clearly. As others have said on here - please send this to all the major cancer charities, such as Macmillan, Maggie's, etc, as well as OC specific charities like Ovacome, Target Ovarian Cancer, etc, so that they can take up these issues on our behalf, using your qualitative evidence. The huge psychological impacts of cancer on the person diagnosed and their family, particularly children, is simply not adequately acknowledged along with the quality of life issues you raise. Your post addresses these beautifully. Your children must be proud of you. I wish you and your family all the very best, Sundra
This is such a brilliant piece Elizabeth’s. is there any way we could copy and post it without identifying you? Thank you fo this and for your willingness to speak out. And for your courage.xx
What an extremely eloquent summary of your (and other’s predicament) which I think you should send to NICE, your MP, the Health Secretary, your local news station and anyone else who needs to understand the concept of hope.
Thank you all for your amazing and moving replies and for your advice. I have acted on most of it, just writing an update now which I'll put as a post.
I am sure organizations like NICE are full of well meaning people but you have to walk in our shoes to know that when time is snatched away from us quality is all we have to hope for.
am sure you are right about NICE. Coincidentally I was at a lecture on Saturday by the economist who developed the QALY algorithm. I imagine that when it was developed in 2004 it was a big step forward from a formula that looked only at overall survival with no reference to quality of life. But it doesn't allow for emotional wellbeing and it doesn't allow for hope! Hard to quantify I know. I'm writing to NICE now, I hope you don't mind me quoting your response to my post.
I am sure you are right about NICE. Coincidentally I was at a lecture on Saturday by the economist who developed the QALY algorithm. I imagine that when it was developed in 2004 it was a big step forward from a formula that looked only at overall survival with no reference to quality of life. But it doesn't allow for emotional wellbeing and it doesn't allow for hope! Hard to quantify I know. I'm writing to NICE now, I hope you don't mind me quoting your response to my post.
The problem is, I think Niraparib nearly killed me...and I have two 14 year olds who I would like to stay with too. I would not want to stop others having it and would probably try it again if I were in their situation, but I know several people who have probably had their quality of life reduced by it...one of whom who was on this site and probably died earlier than she might have done otherwise.
I am delighted it works for many, once the side effects have worn off and it seems that will be so for you but I don't think the decision for NICE was as easy as perhaps you believe it should have been. I actually ....on this occasion....thought their decision was fairly sensible. I also thought other people on this site need to know ...the unfortunate, for some of us, reality.
Sorry to be contentious, would really rather not be as this site is at its best when it can be supportive....will keep my fingers crossed that things get better and better for you and others in your situation. Love Chris
Not contentious at all Chris - that has been your experience of Niraparib and you are absolutely right to share it. I know that nirparib and other PARP inhibitors don't work for everyone, just as other drugs don't. I suppose what I feel is, that if scientists have devoted their lives to developing a new drug - any drug, but especially for ovarian cancer where so little has been new for 20 years - and that drug has been tested and found to be effective and safe for most women, that consultants should be able to prescribe that drug on the NHS if appropriate for that woman. Basically so all women have equal access to treatment.
Please don't worry about not being supportive, I did not read your post like that at all. Your posts are always so, so supportive and this one is no different. I think you were one of the first people to respond with support the first time I posted something on here. I really hesitated writing about Niraparib because I am very conscious that some women (like you) were not able to continue to take it because the side effects were too toxic - and they are pretty toxic I think - , and some women cannot access it. In the end I felt I had to say my piece because I was so shocked by the QALY formula that NICE use. Interestingly, the limitations of the QAL formula is being debated in the house of commons at the moment- not around drugs for ovarian cancer but for cystic fibrosis.
Hope you are as well as can be and thank you for your good wishes,
thanks for your reply Elizabeth....I saw what was being discussed in Parliament about cystic fibrosis...I remember campaigning for free prescriptions for cystic fibrosis sufferers 30+ years ago....am still not sure if that battle was ever won!
You are right about ovarian cancer drugs being behind. I do wonder if immuno replacement/stimulation therapy will be the way forward...maybe too late for me but encouraging for others....thanks again for your fast response! love Chris x
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