Apologies

I wrote that Avastin was roughly £25000 for a 10 month course which is £1.56 for every year of life a 50 year old woman has lived.

It is actually £1.36. Not much really, is it?

[Zannah]

That really puts it into perspective! Particularly when you think how much the majority of us will have paid in taxes and National Insurance.

Thank you for this post.

Love

Zannah xxx

[Whippit]

Hi Sue

I'm completely confused by the pricing of Bevacizumab (Avastin). NICE quotes it as costing £18,500 per patient for a 10 month course of 15 treatments but the course of Avastin is 18 treatments which is 12 months. They have also based their calculation on a 15 mg dose for an average patient of 70 kgs. I calculate this works out at £1,233.33 per dose.

The cost for a full course of 12 months at the 15 mg dosage would be £22,200 though not all patients complete the course.

The OCEAN Trial concluded the drug was equally as effective at a dosage of 7.5 mg per k body weight so an 18 treatment course would cost £11,100.

I received 16/18 treatments on the 15mg dose at a total cost of £19,733.33 and had 6 months progression-free survival after chemotherapy. Nobody seems to measure quality of life as part of the assessment of cancer drugs. I'm horrified by the cost and there's no way of knowing how my treatment will impact on my total survival so I'm not entirely convinced it was value-for-money. If I'd had the 7.5 mg dosage at a total cost of £9,866.67, which is commensurate with the cost of chemotherapy I received, I wouldn't feel it was such an excessive cost.

Looking at the side-effects, I was lucky. I had joint pain, back ache some sleeplessness, nose bleeds and itchy blood clots in my nose. I've become less fit as a result of these side-effects because exercise was painful. Now I've stopped the course I need to do what I can to build up my core strength and general fitness so I'm in the best condition when I start another line of chemotherapy in a few months' time.

As many of you know I fought to obtain Avastin and obtained an address in England to do so. For me it was a matter of justice - if some people in Wales could have it and a lot of people in England could have it then I felt I should be entitled to have it too. It gave me hope and I used to argue that an average 4 month additional survival means for some lucky patients it will give 2 or 3 years additional survival. I wasn't prepared to give up on that and I could not live with the thought that I was denied Avastin and I might have had a longer life by having it.

In hindsight my perspective is a little different. I vehemently hold on to my belief in justice and equality of access to cancer treatments. Nobody should be denied a treatment that might benefit them if it is available to another patient. Our Governments should ensure that access to treatments are transparent and fair for all patients.

Has the £19,733.33 spent on the drug been value for money in my case? When I read patients could not access A&E over the last few weeks because of under-resourcing and some may have died as a result who might have been expected to live to a good age I'm not sure I could face their bereaved family and friends and justify my own case.

I'm not stating an argument for or against a national cancer drugs fund, merely offering a snapshot from both sides of the argument with the benefit of hindsight and with the ability to put that into the context of the problems the NHSs currently face.

[Hidden in reply to Whippit]

Well, I'm looking for justice too. Who could deny anyone misdiagnosed the right to be treated with the latest technologies?

And many women are very ill because they were unaware of the symptoms themselves. As you know yourself', the future of Be Clear Ovarian is now in jeopardy so that's a problem too.

One in 4 Ovarian/PPC patients are diagnosed at A and E which makes them in the main, late stage and incurable.

If there is a problem with the Health Service, then let's start funding it and start treating an overlooked illness with the recognition it now deserves.

I myself have spent a lot of time at A and E and been close to death whilst waiting for treatment.

I don't think that, even at my lowest times there, I would have put forward the idea of restricting drugs to cancer patients.

You're saying you wanted equality. Now you have it. None of us can have the drug. The irony is that you have yourself. And that's the point.

Unless, of course, you're wealthy and can pay for it. I don't think £25000 is a lot for the average city trader or senior civil servant who make these decisions. I also don't think most senior Tory Politicans have to worry about money. They just ring the Harley Street specialist they usually use and get it anyway.

Next time I'm with the drug addicts and time wasters at A nd E, I'll think about what you've said to see if my mind has been changed. I don't think it will have been.

The problems at A and E are connected with bed blocking brought about by austerity measures.

If you go down the road of funding Annie, and how the money is spent, I'd have hoped that you'd have been an advocate in support of more treatments, not fewer to give Ovarian patients more choice. Not everyone responds the same.

And let's not forget that we're talking about patients who are already having other drugs removed if the draft NICE list is ratified.

Now you're high profile and had the drugs, please don't put forward views which may make the situation worse for other cancer patients.

[Hidden in reply to Hidden]

Very well said Sue.

I cannot understand how anyone with cancer would try to justify these dreadful cuts particularly when they themselves have had the advantage of having the Avastin and certainly were not quibbling about the cost then.

Comparing the state of A and E with restrictions on cancer drugs is just ridiculous.They are both services which along with many others should be prioritised.

I dread to think what Annie's stance is going to be when supposedly representing cancer patients on various committees.Certainly not consistent or passionate.

How more people do not see the narcissism I do not know.

Anne B

[Decca4Ever in reply to Hidden]

I don't think Annie is being narcissistic. Her post is altruistic, wondering if the £20,000 that was spent on 6 months of progression-free survival was worth it in her case, for society, as well as for her.

Someone, somewhere is making these stark decisions we don't like to think about all the time. I wouldn't compare cancer drugs to A&E, because most of the patients there are not in life-threatening situations. The current crisis is due to mismanagement of resources as much as anything.

But there are other diseases that kill or destroy the quality of life. And would it be better to use funds to develop new drugs that might cure, rather than spend them on extending life for a limited term? I'm glad I don't have to make that sort of decision.

One thing I would say tho' is that there are enough people arguing that we can't afford it, it's a waste of money etc etc. No need to bolster their argument.

[Hidden in reply to Decca4Ever]

For many people this is a big issue.

Being denied a drug which has been proven to extend life is a big issue.

I am shocked and upset at the decision and the attitude of some ovarian cancer 'sisters'.

We should be fighting to get the decision reversed not saying it was too expensive so tough luck for those who thought they may get a chance.

Anne B

[Hidden in reply to Decca4Ever]

If you re-read the post Deccan, Annie herself has explained that her actions were not altruistic.

[Hidden in reply to Whippit]

As an added point, quality of life is factored into the Quality-adjusted Life Year (QALY) equation when drugs are being assessed for their effectiveness. A 0-1 scale is usually used so, if, for example, a patient gains full health after treatment, they may get a score of 1 but if they are not so good and need help, (say, half-way to fitness,) they might get a score of 0.5.

This means that a calculation is made on what is thought to be quality of life.

[TheOvacomeTeam Partner]

For clarity - Taken from NICE and the Manufacturer submission:

"The Committee considered the most plausible incremental cost-effectiveness ratios (ICERs) from the model based on the GOG‑0218 trial presented by the manufacturer and by the ERG in their exploratory analyses. It noted that the manufacturer's base-case ICER was approximately £144,000 per quality-adjusted life year (QALY) gained. The Committee considered the ERG's exploratory analyses, which examined the changes in the ICER with a treatment duration of 15 months or a time horizon of 25 years or both, and gave a range of ICERs from £128,000 to £161,000 per QALY gained. The Committee agreed that the range of ICERs obtained from the cost-effectiveness model of bevacizumab plus paclitaxel and carboplatin were outside the range normally considered as a cost-effective use of NHS resources. It therefore concluded that bevacizumab within its marketing authorisation (that is, at a dose of 15 mg/kg), plus paclitaxel and carboplatin, would not be a cost-effective use of NHS resources for first-line treatment of advanced ovarian cancer compared with paclitaxel and carboplatin alone."

In non gobble de gook

It costs £144 000 for each year of good quality of life achieved. BUT this is at the higher dose, so at the preferred lower dose it would be cheaper.

taken from the NICE website

nice.org.uk/guidance/ta284/...

[Hidden in reply to TheOvacomeTeam]

A thank you for this explanation. I think I need to get my head around the formula which is my task for today!

[Zannah]

Hindsight is a wonderful thing Annie. However whether or not it's been cost effective for you is not the issue. As Tina B says, the rest of us would like the chance to access a drug that you have had, should it be needed.

You have ensured that you have a high media profile to fight for what you believe in. It would be a travesty if that led to unguarded remarks making it difficult for others.

Zannah

[Whippit]

Certainly the latest news from NICE re Taxol and the National Cancer Drugs Fund re Avastin and PARP inhibitors is not favourable for patients will ovarian cancer. I have had no influence in these decisions whatsoever. Target Ovarian Cancer have been representing us on the NCDF Panel and they made a concerted effort to lobby on our behalf during the review process.

It's heartening that Avastin at first line indication has been retained and as I understand it this is because it has found to be effective at the 7.5mg dose whereas it has been less effective at 2nd line indication with a 15 mg dose. What is urgently needed is a thorough evaluation of the genome sequences of women who respond well to Avastin in order to get to a stage where this therapy can be targeted at patients who will benefit from it. I took part in a trial which is doing just this so let's hope that contribution is helpful and we might look forward to seeing some conclusions.

I think Sue hits the nail on the head. If there are problems with the NHS let's start funding it - but this surely means an increase in taxation or our taking out private health insurance. I also take Sue's point about time-wasters in A&E but any form of judgement on the background and rationale of people who turn up on the door of A&E is fraught with problems. Not only do we need to see the NHS properly funded, we also need to see it functioning efficiently with some very challenging dilemmas. Currently it is the UK Labour Party Manifesto that gives us most hope with their promise of a comprehensive drugs fund, and yet it is the Labour-dominated Coalition Government in Wales which has treated cancer patients so unfairly. At this point in time I'm reminded of the Lib-Dem's promise prior to the last election about tuition fees for Higher Education.

As a patient representative I can't reinvent my own history. If I'm asked did Avastin work for me, then I have to say I don't know. I relapsed during treatment so Avastin was withdrawn but I was very grateful to have had the chance and so would other women. I can also say that I know of one women with ovarian cancer who did extraordinarily well on Avastin on 2nd and 3rd line treatment. I've taken on board your comments on this thread and will do my best, if I'm given an opportunity, to represent your thoughts on the issue.

[Hidden]

My concern is that a patient representative should be objective in their views and not over rely on their own personal experiences.

To volunteer yourself to speak to the media about the drugs cuts and then say Avastin is not all it is cracked up to be is not representing the opinion of the majority of those with advanced cancer who have hoped to be given a chance to have Avastin.

Statistics show- looking at the rest of Europe in particular- that it is very effective for many people.

As someone who likes to maintain a public profile and is media savvy you must have realised that your comments would be controversial and attract attention.

It was so insensitive and very inappropriate in my opinion.

Anne B

[Zannah]

No one is suggesting you rewrite your history Annie.

The point is that having ensured that you have a high media profile to enable the promotion of equality of access, which is entirely laudable, when you then publicly question the efficacy of a drug people are bound to question your validity as a patient representative. Particularly when these views have been expressed in more than one place and it is a drug that you battled to get.

With respect, I would question whether you would adequately represent my views.

Zannah

[angeladale]

It has been very clear for a long time , that we will all be fighting for drugs that are too expensive( Big Pharma ) and an NHS as we know it , being dismantled under our noses , regardless of where we live, and no matter the government .

We are all very concerned for our own longevity , those of us with this disease , and live in terror of there being no drug available evntually .

But , there are many cancers out there , all clamouring in their own way for recognition and urgent treatment . It all needs research , it all needs funding ...yes , genome decoding is probably the way forward but it all takes time !

Might the time come when those with auto immune disesases ( my husband ) will have drugs withdrawn ...heart medicines rationed ; diabetes drugs curtailed ... you all get the picture ?

We are living in dificult time and unity has to be the only way forward .

Constant anxiety is the name of the game and comes free with the diagnosis ; but the anxiety must not corrode us , nor divide us .

The NHS should not be a political football ...the idea that treatment is free at thepoint of delivery is a nonsense ...we have paid through our NI and taxes , as have everyone since its inception .

I resent being made to feel grateful for my last four years of treatment ; but i am aware that we are also lucky in that we live in the 21st century ...20 years ago , we would have had no chance at all .

BUPA is currently running its own Cancer ad ...we must be very careful that we do not bow to Private insurance ...most of us have experience of someone who has experienced American/ South African

medi care ...even with insurance , treatment has to be negotiated , it is not free then , either !!

This is the time to redirect the fight for the best care we could possibly have within the NHS , for everyone , regardless of postcode , age or gender .

My very best wishes to everyone .

Angela

[Hidden in reply to angeladale]

I agree that we should be united Angela but unfortunately some people seem to have their own agendas.

I have been very disappointed in the lack of interest/ support in what is a very current and important issue which will affect so many of us.

Unfortunately we do have to speak out and stand up for what we feel is right.We cannot accept this backward step in treatment.

My consultant can now say to me there is a treatment which may extend your life considerably but I can no longer offer it to you.

This is surely not the way forward.

Anne B

[Hidden in reply to angeladale]

Absolutely Angela .. We have to remember that whilst we don't give a cheque to the surgeon or the oncologist or the drug company, we do draw on subscriptions paid into the fund by most of us throughout our working lives.

I, like you, hold the NHS dear, and I'm not about to accept that funding bound for Ovarian patients in the here and now should be redirected elsewhere. And you're right, coding is for the future.

Individualised treatments based on individual DNA sequences is almost science fiction. There is no current system to put it into practice. The argument does not stand up. I hope it happens soon, but for now, we need a range of treatments to draw on.

When Ovarian patients go to Ovarian conferences and hear about emerging technologies, they are not there to be persuaded that their own lives should be sacrificed for the good of research.

This is a Cinderella disease, and we should all work together to break this idea and to get people outside of the community to understand that there are real injustices faced by Ovarian women.

Very best wishes to you too.

[angeladale]

There are some people who can fight using media , some who engage their MP , some who will write to GPs and so on . We all do what we can do ; that includes Oncologists working with shrinking resources and nurses working 12/14 hour shifts .

We all have an agenda , governed by our circumstances financial or otherwise ; some fight with words , some are good in demos , some can write , some can argue . There are those with small children bewildered , some with elderly parents to care for whilst ill themselves . It's all very complicated for us all , and hindsight is the most useless virtue .

I have lost four , close friends to cancer in the last six months , all died on last chance drugs .

I have been told , pretty much that I am through the drugs ... I have watched four lives " extended " and I am not convinced that treatment at any cost is the way forward ...money into honest , paliative care might be better , for example . There has to be a bigger debate .

In the best of all possible worlds , the NHS would be a botomless pit , where all drugs , all technologies would be available to all , no question ...

it would be great if we could all try whatever was on the list , but we do have to juggle what's out there with the side effects , cost effectiveness , because that's the world we live in .

But in a shrinking state there will be rationing and choices have to be made , we are told .

Public services need to be protected or Bankers etc will indeed buy whatever is available ...

I have met a woman in chemo who has mortgaged her house to buy Avastin whilst having NHS treatment too ...clutching at straws ? Her own Agenda ?

Avastin was being withdrawn well before the recent news . It has been known for a long time that Avastin had a limited use ...that it bought time , whilst we hope for other drugs to emerge .

But the finances have to come from somewhere in the meantime .

To bed now , hoping to wake up tomorrow in a perfect world ,

where all things are available to all .

[Hidden in reply to angeladale]

I was wondering what you mean about honest palliative care? My own chemotherapy is part of my palliative programme. Palliative isn't about helping someone to die comfortably, it's helping them to live comfortably.

[angeladale in reply to Hidden]

Just so ; money can also be redirected into living well without the constant chase for the next trial drug ...if you are on a chemo that gives you a quality of life which is acceptable , then that's wonderful of course . But for some , endless chemo after chemo is too destructive ; that's all I meant . Enough now ...

[Hidden in reply to angeladale]

Hi Angela .. I know what you mean and some women may come to a point where that happens. I woudn't have made the point so pointedly but I felt I had to in view of the drugs restrictions being imposed at the moment. Having chemo options for those who need that is part of palliation and not separate,from it. And not being on chemo when it's needed is destructive in its own way too sometimes. That's all I'm saying. I didn't mean to sound contentious.

[Hidden]

The treatment for ovarian cancer has not had many advances for years.Avastin was the best hope for an extended lifespan many of us had.Less money has been spent on this cancer than many others.Why should we just accept this when it is obviously so unfair and has serious consequences for a lot of women living with ovarian cancer.

Avastin is being taken away and we are left with nothing to replace it.Yes there is talk of new,more individualised treatment but that will not be freely available in many of our lifetimes.

I am a great advocate for research and a better future for others but we also need to look after those who need support and treatment now.

Anne B

[Katmal-UK]

I for one believe that Avastin, for me was worth every penny. I got Avastin in the form of a trial paid for by the drug company at a cost to them apparently of £42500 and got a 4.5 year remission. So, 7.5 years and two occurences later, still working full time, for me I believe it worked. We are all different but all deserve the best chance.