Wales Government Tolerates Unfair Access to Cancer Drug Bevacizumab

[Whippit]

Presentation to the All Party Political Group for Ovarian Cancer: Wednesday 5 June 2013

The situation in Wales

There is no Cancer Drug Fund in Wales. The Welsh Government has devolved decision-making to the seven Local Health Boards. Our oncologists have to make an Individual Patient Funding Request, an IPFR, to the board responsible for each patient’s care. A picture is emerging of an unethical situation where some boards are very likely to approve the request and others have not approved a single application for Bevacizumab to treat Ovarian Cancer.

I’ve been unable to produce statistical evidence for the meeting today despite having made Freedom of Information Requests to every health board in Wales. I can therefore only bring circumstantial evidence to the table. I bring you my story. I believe it’s factually accurate, and it’s an honest reflection of the situation in Wales regarding access to Bevacizumab.

I run the SE Wales Support Group for Women with Ovarian Cancer

Four members of our group were recently told they met all the eligibility criteria set out by NCDF and you would therefore assume in a fair society that IPFRs would be made for each one of them.

Their health care is provided by 3 adjacent health boards in S Wales.

Two of the women are treated by Cardiff and the Vale. Women receiving treatment from this health board at the Velindre Hospital Cardiff are given absolutely no hope that an IPFR would be successful. I’ve been told this board, the largest in Wales, has never approved a request for Bevacizumab to treat Ovarian Cancer.

On hearing this a member of our group became concerned. Her oncologist had submitted an IPFR to the Abertawe Bro Morgannwg Health Board and he had given her no indication that it might not be successful. She contacted her oncologist and she received the good news that the request had been granted as expected. She has now started her course of Avastin. We’re all very happy for her and expect her to benefit from the additional remission and quality of life associated with the drug.

A fourth member of our group lives in Monmouth. She is served by the Aneurian Bevan Health Board but receives her treatment at the Velindre Hospital in Cardiff. Some IPFRs have been approved by her health board so she won’t have to confront the tragic destiny of patients at the same hospital whose treatment is provided by Cardiff and the Vale. As you can see, a challenging and unacceptable ethical dilemma repeats itself daily at the Velindre Hospital.

Target Ovarian Cancer have asked me to tell you how I feel.

How do I feel as a UK Tax Payer and having paid NI for over 42 years? I am bewildered I’ve begun to feel over the 2 years of my cancer journey that I’m not getting a fair deal by comparison to other parts of Wales or the UK.

How do I feel as a resident of Wales? I’m disappointed. Having a devolved administration was meant to make things fairer. The system in Wales is dividing its patients into sheep and goats and the judgement upon us appears to be based on nothing more substantial than a postcode lottery.

How do I feel as a woman with advanced and incurable ovarian cancer living in Cardiff?

I feel cheated. In effect I have no access to Bevacizumab. I am about to have a second line of chemotherapy and I should be eligible to receive it as I meet all the published criteria. However I find there are additional unpublished criteria for access to a drug that would extend and improve the quality of my life. I live in Cardiff, Wales’ Capital City and I’m treated at Wales’ leading Cancer Centre. These have become the barriers to my obtaining Bevacizumab.

I’m aware that you’re not able to help directly and I now need to make my case in Wales. I’ll leave you with this thought.

In 2008 Wales launched a drive to improve its poor record of cancer survival. The Welsh Government has set out to achieve five-year survival rates comparable with the best in Europe by the year 2015 and yet its largest health board refuses all requests for a drug that prolongs and improves the quality of life for women with Ovarian Cancer.

I’d like to conclude by thanking Target Ovarian Cancer who do so much to support women living in all regions of the UK and who invited me to speak today, and I’d like to thank all of you who have listened to my story.

[Hidden]

I've tweeted the link to this with a comment. You can follow @tweetingasme or search the hashtag #OvarianCancer to retweet it. GO ANNIE!

[Whippit in reply to Hidden]

Thanks for your kindness and support Linda.

[Alice23]

Dear Annie

All best wishes for today and thank you so much for the work you are doing for all of us.

I have been coming onto the Ovacome website since my diagnosis 2 months ago. I have seen how much wisdom and love you have given to us on the site. Thank you and it has made a really important difference in my life coping with the shock and disbelief. Thank you again for this vital awareness raising and yes, the situation is unacceptable. My home is in Cardiff but am currently in the Netherlands - I am back next week in Cardiff and if it is convenient for you, it would be lovely to meet. I am a Welsh speaker.

With love Traude

[Whippit in reply to Alice23]

Bora da Traude. That about exhausts my command of the Welsh language - that, and Wales' favourite expression, 'Chwarae Teg'. Unfortunately in the country that cherishes fair play there's none to be had for women with ovarian cancer.

Thank goodness you are in the Netherlands where you'll get better treatment. I recall when you first posted you said you felt like coming home. There's no welcome in the hillside for the likes of you I'm afraid. Stay away as long as you can. Oh this would make such a good story. Welsh woman fears to return home because of unfair treatment for women with cancer in Wales. We'd make a pretty pair at the Assembly.

I'd absolutely love to meet up next week. Weds and Thurs are best for me. I could meet Tues and Friday but it would have to be in a fire station as I'm doing Cancer Awareness those days for Cardiff's fire service. Let me know which is best for you. I'll PM my contact details. Xxxx

[wendydee]

Very good speech, Annie. I've copied it to a relative of ours who is a councillor in Carnarthen.... Labour. Don't know what he can do but he will share info, I am sure. Hope it all goes really well. I'll be thinking of you

Love Wendy xx

[Dyana]

Annie , amazing speech , must have taken you ages to put together and so eloquently , rubbish spelling. Good luck , dy

[Dyana]

My spelling , not yours

[Whippit in reply to Dyana]

Ha ha ha ha, you had me scouring my text for spelling mistakes! I'm a terrible speller. have to check everything. Xxx

[Hidden]

Hi Annie Actually,

Well done, you are in my thoughts and sending my very best wishes love x G x

[Hidden]

Well done Annie.

[Hidden]

This is absolutely excellent. You are doing a wonderful job. I will be thinking of you this pm. Cx

[Fitzy]

Well put Annie - a really good presentation encompassing all mute points. Wish I could be there to hear the response!! Go kick ass!! (not usually one for strong language but think this merits it).

xxxxxxxxx Col

[Fitzy]

That should be 'moot' points - doh!

[Whippit in reply to Fitzy]

Loved mute points. That will be the case when I take my challenge to the Wales Government. Thanks for the encouragement. Xx

[Hidden]

Very clear, concise and to the point - great stuff Annie!

Lynn x

[citrine]

Well done Annie. Absolutely brilliant!!!

ov Mary xx

[Pimkin81]

Fantastic speech- well done!

Claire

[ChrisH]

Well done Annie. Keep it up!

Chris

[Hidden]

You're one bloody amazing woman Annie. Hope you didn't wind yourself up too much today, you need to rest after all this stress...

Love

Sue xxx

[Whippit in reply to Hidden]

Dear Sue

I had no idea what was going on in Wales until Target Ovarian Cancer asked me to give a presentation 10 days ago on what is going on here and I had to do some research.

I'm sympathetic to the problem of it being an expensive drug and that's why it's limited to advanced cancers and only to the first two lines of chemotherapy. You have to draw the line somewhere - but for it not to be uniformly administered in Wales, Scotland and Ireland is appalling. Worse than appalling. It's immoral. I feel like storming the Tax Office and demanding my money back!

I'm absolutely incensed that the Welsh Government, and indeed Scotland and Northern Ireland administrations can get away with a shambolic allocation of a drug that has given us the greatest breakthrough in the treatment of ovarian cancer for 15 years. Honestly in the devolved administrations we don't have a clue what's going on.

I did see you had an idea about a PR campaign. Please let me know what I can do. We could really do with a snapshot of the whole of the UK. United? More like Dis-United.

I've returned to my daughter's house. I've put my feet up and have poured myself a glass of wine to think what the next step should be. Probably relocate elsewhere in the UK.

Love Annie xxx

[Hidden in reply to Whippit]

Well done Annie, a great speech, I would agree that relocation could be a good option but in my case it would be out of the fat into the fire......all my family are in Scotland xx.

[Whippit in reply to Hidden]

Chris, there are other places than Cardiff or Scotland. You'd only need to register an address in Bridgend because they are within the Abertawe and Bro Morgannwg Health Board that do fund Bevacizumab.

You don't actually have to live there. Just find someone with an address in that health board area and have your post sent there. Ask the Velindre for a second opinion/referral to check out what the service would be for you in that health board area.

There was a talk by Roche yesterday to say that the problem with a side-effect of perforation of the bowel or intestines was rather more likely where the bowel was 'stuck together'. Not sure what that means. Rachel doesn't talk about Avastin to us because she can't get it in Cardiff and the Vale but you could still ask for her professional advice as to whether she'd prescribe it if she had the means to. If she would a referral is your best option.

I was a bit chuffed. I was sitting next to the Chief Executive for Cancer Research UK and she said it was a good. I don't think the same tack would go down so well in Wales! ha ha xxx

[Hidden]

Well done Annie. The speech is great Thankyou for the time and effort you are putting in for ovarian cancer.

Love Suex

[nork2]

Wow. I take my hat and headscarf off to you. You are doing a marvellous job for us all, regardless of where we live. Many thanks xxxx

[Whippit in reply to nork2]

Dear Nork

I'm really only trying to raise awareness of what's going on in the devolved administrations. What is terrifying is that living in Wales, Scotland and Northern Ireland we really aren't aware of the injustice going on and the incompetence of our governments who haven't even bothered to set up a Cancer Drugs Fund so applications for Avastin jostle for priority with the need for new equipment.

Please keep talking about it. Please visit my Facebook page and share with your friends, asking your friends to share with them. You can find me - Annie Mulholland xxxx Love Annie

[Hidden]

It's unacceptable as you point out. As for Freedom of Information in any part of the UK .. Well.. there seems to be in many areas of life an increasingly secretive approach to managing the masses. If it's about saving money from the public fund with a lack of transparency and honesty to those subject to the care of the NHS, then this kingdom is following a very dodgy route. I send you my good wishes Annie. X

[Whippit in reply to Hidden]

I had a reply which was so awful it made me laugh. They don't collect the statistics as to how many applications they receive for Bevacizumab and how many are granted per Health Board. All our money in Wales goes on managing the seven health boards. I was told there are only 10 to manage the whole of England!

[Hidden in reply to Whippit]

Strange .. Well, if they don't collect the data, they don't have any to divulge. New approach to secrecy! Rubbish isn't it. This data needs collecting but there must be data per hospital even if its only how many prescriptions have been issued by the pharmacy. Could a court order be issued for this data! C

[Keli]

Hi Annie, great speech. But you have such a good way with words though. It's amazing what you are doing. Am absolutely disgusted by what you have written about the welsh health council and how they can stop people who need this drug so badly. Who gives them the right to play god. Am sure if it was them that needed it, they would approve it! I think with all these companies that have been in the news just lately ove the tax bill and the need for transparency it should also be extended to the health service. I know money is tight and they have to be careful and these drugs are expensive but surely many treatments for many illnesses are. But where do they get off saying no to someone who could benefit so greatly from this great new drug. It makes me so angry. Maybe a Facebook page for causes may push it into the open abit and may help? Good luck Annie, lots of love keli xx

[Whippit in reply to Keli]

Dear Keli

Thanks for your support. Of all the things that should never be devolved it's education and health. The two fundamentals of a civilised society. Devolution is an expensive luxury and funds are being swallowed up by an enormous raft of bureaucracy and administration in Wales.

If devolution made things better or fairer for us I'd be saying hooray - but this story shows how devolution has become a monster for democracy.

Sorry, I'm back on my political rant now! Will stop and get off to the Target offices to plan their Being-Together meeting in Cardiff later this summer.

Love Annie xx

[Hidden in reply to Whippit]

I just blame the people who voted for it... lets face it they got what they asked for love x G x

[Whippit in reply to Hidden]

Well to be fair, people invited to vote in a referendum rarely do so on a great deal of information or financial projections as to the effect on the economy. Devolution was ridiculous and it was even more ridiculous that nobody put in any checks to see if was a) efficient, and b) affordable after 5 years.

I voted against it. I said if I needed a kidney replacement one day I'd like fair access to treatment. Who'd have thought I'd be at the bottom of the pile with ovarian cancer in a health board that doesn't fund a drug that might make a difference to my life expectancy! Xxx

[Hidden in reply to Whippit]

Hi Annie,

It was only said in jest ...as I know you are the one who is now paying the price for devolution...and I agree it is ridiculous...

Love x G x

[Whippit in reply to Hidden]

Let's hope before the Scottish people vote for or against independence someone comes up with the real financial projections of what they're proposing and some kind of contract with Westminster to rejoin forces if necessary. xx

[bluebee]

Annie

You are wonderful. I can only echo what has been said above and add my praise for your courage and determination. Surely someone with power in government can help us here.

Maybe Charles Saatchi?

[Whippit in reply to bluebee]

Unfortunately the Welsh Assembly, which renamed itself a Welsh Assembly Government and then promoted itself recently to a 'government' has a carte Blanche to do what it likes. There were some very auspicious people at the meeting yesterday but they could only look on in sympathy. My MP was there and has a copy of my speaker's notes.

Best walk with my feet whilst there's still time. Xxx Annie

[mummybear59]

Well done Annie.x

[wendydee in reply to mummybear59]

Hi MB

Haven't seen you around on here for a while! Was wondering how you are. How's things? Love Wendy xx

[Orsolini]

I agree you are wonderful and all you've done is fantastic. Thank you Nicola x

[Niobe]

Annie, it could not have been a better presentation for crucial results. Thank you.

Good luck with a successful response to keep you in good shape for fighting

as well as enjoying life....

big white hugs and love

from Niobe

[Jan76]

Our Amazing Annie .....

'Thank you ' those words are not really enough for all your sterling work on behalf of women everywhere whether it be in Wales or any other part of the UK ...

Love Jan xxxx

[poleglass]

well said annie! In n. ireland only women who are newly diagnosed a 3c and going for first line treatment are eligible to recieve the avastin drug so women like me who have had three chemo treatments are not even offered it It should be offered to all ovarian cancer sufferers but once again it comes down to finance.xx.

[Whippit in reply to poleglass]

Dear Una

It's helpful to understand the case in N Ireland. I regret I was the only representative at the table from the devolved establishments. It was mentioned that Scotland and N Ireland are in a similar situation to Wales having no Cancer Drugs Fund so there was an assumption that my story could apply to the other devolved administrations.

Some while ago I pasted up the National Cancer Drugs Fund Criteria for approving Avastin. It is available in England for first line and second line chemotherapy. Quite honestly it's a sham to offer it for first line only. Most of us are too shocked to do any research when we're first diagnosed and there's a clinical imperative to put us on chemotherapy as soon as possible so we accept our oncologist knows best. My oncologist knew there was no chance of my having Avastin in Cardiff and the Vale so she didn't raise my expectations and I didn't have it.

It is only now as I've started to relapse, and I've had the good luck for my disease to progress slowly, that I've had the time and inclination to look into the situation in Wales. This, and a very timely invitation from Target Ovarian Cancer, to make a presentation to the APPG. What I've discovered makes my blood boil. We just accept things in the devolved nations. I liken it to swimming round a goldfish bowl and not seeing what's just the other side of the glass.

I like to keep an eye on what goes on in Westminster and I'm interested in comparing what goes on in Wales. Of course there are flaws in Westminster. We're only human after all, but to have flaws in Westminster, and then more flaws in Edinburgh, Cardiff and Belfast is an extremely worrying situation for those of us who lived in the devolved nations. I don't know how much bureaucracy you have in Belfast. The bureaucracy and cost of running the Wales Government is staggering.

I've only just discovered, for instance, that we have 7 health boards in Wales. There are only 3 million people living in Wales - about the same population as Greater Birmingham. Why, I ask myself, are there 7 trusts? This must be enormously expensive and makes for inconsistent treatment for the patients of Wales. No wonder we haven't got a Cancer Drugs Fund. It must all go on management salaries, and yet nursing staff in the wards are being cut to the point where service is being compromised in some places.

I need to keep focussed on the Bevacizumab debate. I don't intend to let matters rest now I've vented my ire at Westminster.

I rather think the women from Scotland, Northern Ireland and Wales should be standing side-by-side in this. Divided we're just one voice of dissent in the crowd. My point is that everyone in the UK is expected to pay tax and NI. We deserve equal treatment.

with love xx Annie

[poleglass]

Annie. The money is spent all wrong. I think sometimes ordinary people would have more common sense running a country than our politicians. Our first and deputy minister have flown twice to japan this year with their entourage for so called enterprise trips.they stayed in 5star hotels and refused to tell the rest of the assembly how much tax payers money was spent.It beggars belief!!. A girl I know had terminal breast cancer spread to her lungs. the drug she needed was available in the rest of the u.k , but not n. ireland .She brought our assembly to court twice to get the finance for her drug and lost both times. The next is even more unbelieable. The working class people in the area she lived in raised 1300 pounds every 3wks. to pay for her chemo tablets. The whole community she lived in done continual fundraisers for her to keep her alive. The sad thing is, in oct. last year the dye didnt go in proberly to her vein, so her cat scan results were not clear, she waited12wks!! on a repeat scan and by the time she got her results ,the cancer was in her brain and everywhere.They wouldnt give her any more chemo tablets until they got results of the scan. Caroline parkinson died in february .A single mother of a 12yr. old boy. who fought the establishment for so long. A very brave 41yr. old lady. Broke my heart annie. That is why iI have become so vocalas if we dont speak out nothing will change for future sufferers. Sorry about the rant, it makes me so mad and so sad.xx

[Whippit in reply to poleglass]

Dear Una, somehow I missed this post. What a dreadful immoral situation is going on over there. It's crazy all this foreign investment in the devolved nations. Why not send our best people from Westminster to represent us all. The Wales Government has over 100 offices around the world - supposedly to attract inward investment.

We don't want inward investment. We need more business start-ups by home-grown companies, more entrepreneurs in Wales, more innovative products, more exports. Two-thirds of our population work in the public service. Only 1M work in private enterprise and are actually bringing money in.

Your story about Caroline is so tragic but you should take heart that ordinary people in her community did so much for her. What a wonderful tribute to her. What a terrible judgement on your government who turned their backs on her. People in the devolved governments would all be MPs in Westminster if they could. We're left with a lot of amateurs running our government and multiple layers of bureaucracy, waste and incompetence.

You rant away Una. You have reason having seen so much tragedy.

sending love and hugs. xxx Annie

[poleglass]

I think it would be a good idea, for target ovarian cancer to take a representitive from each regional area in the uk. and bring us to house of commons to state our cases and be heard. Strength in numbers is so much better than individuals on their own . What do you think of that idea annie?

[Whippit in reply to poleglass]

Absolutely Una. Divided we're powerless. We are subjected to a humiliating lack of resources and medicines and we need to join together. My perspective in Wales would blame the cost of a bureaucratic government. We have seven health boards in Wales serving 3M people. Annwen said there are only 10 in England serving 53M people.

In Wales we have a huge unwieldy government that is busy creating new laws that can't be monitored - shopping bag laws, dog poo laws -are the important or essential? Nobody is monitoring whether they are being upheld so what's the point of them?

We have a massive body of people employed by our Government in Wales. If you speak to people working there they will tell you how bureaucratic it is. In Wales we have 3M residents with 2M working in the public sector. Put it another way, only 1M people are earning money, the rest are spending it. It's unworkable.

But I digress on to anti-devolution politics.

Back to your suggestion. We can still lobby Westminster about the state of cancer care of the devolved nations particularly in light of Macmillan's research published yesterday that tells us if the current trend continues 1 in 2 people will get cancer by the year 2020.

Let's get some feedback from Sharon and Joanna in Scotland to see what they think of this idea.

xx Annie

[Whippit in reply to Whippit]

I suppose the quick solution would be a public announcement for everyone living in the devolved nations to invest in private health care. Won't help us - but at least it would resolve the problem for new cancer patients.

[poleglass]

sorry annie. Only replying now as i was at caravan for a few days. I am up for anything that will improve services for us and future generations of sufferers..x

[Whippit in reply to poleglass]

Sadly I feel the only thing I can do for myself is to move to London. This is enormously disruptive and probably not an option for women living in the devolved administrations of Scotland and N Ireland. At least I'm only a 2 hour train ride from London so it's possible to divide my life between both cities. It doesn't mean I shall give up lobbying for improved health care for the women in Wales.

I've just had my paper to the APPG translated into Welsh so it can be submitted to the Senydd here. Traude who lives in the Netherlands speaks Welsh and she's happy to take up the cause too. xx

[Whippit]

Just to let you all know I've amended my blog Wales Government Tolerates Unfair Access to Cancer Drug Bevacizumab.

I saw Rachel, my oncologist, today and she said that the Velindre do take part in clinical trials. It seems they just don't tell anyone about it and I've certainly not been invited to participate in any of them.

I've deleted the paragraph that says the Velindre doesn't take part in leading-edge clinical trials.

It was a good meeting today as I've been able to put Rachel's team in touch with Target to ensure if the Velindre are doing trials that they tell people about them. At the moment if you search the Target database for ovarian cancer trials only one comes up for the Velindre Hospital, and one for Wales.

Trying to reunite the Dis-United Kingdom to provide a better society for everyone is a nightmare!

xxxx Annie

[poleglass]

All the regions handle it differently .You would think if we are all belonging to the u.k. , the treatment and access to drugs shoulld be universal and available for us all. That includes clinical trials x.

[Whippit in reply to poleglass]

My point exactly Una. In some ways I can understand the differences for you in Northern Ireland as you're a distinct island. There is absolutely no excuse for health care being different in different parts of the United Kingdom.

I'd happily write to David Cameron about this injustice but feel it would be stronger if all the three devolved nations were on board with it.

Any takers up there in Scotland? Sharon? Eileen? Joanna? Do we want equality of health care despite our attitudes towards devolution and/or independence.

xx Annie

[mrshill in reply to Whippit]

Annie if we could package your strength and drive and use it as a drug we'd all be better. Keep it going you are a fantastic spokeswoman for the cause.

[Whippit in reply to mrshill]

ha ha ha ha - that's a fab idea. My husband says I'm my own medicine. Perhaps I should take myself off to NICE to be appraised! xxxx Annie

[poleglass]

we could all do a better job me thinks than nice!!!

[poleglass]

Wish me luck everyone as have been nominated as" voluntary fundraiser of the year 2013" by n.i. hospice. Have to go tomorrow to belfast castle for lunch. There will be other candidates from various charities there ..Even if i dont win, I am just pleased at being nominated and a lovely 3 course lunch to go with it!!!

[Whippit in reply to poleglass]

Good Luck Una. I'd vote for you as you've raised so much money from your disc. Let us know how it goes but most importantly enjoy the day!!! with loads of love Annie

[poleglass]

thanks annie.xx will keep you posted.

[Whippit in reply to poleglass]

Was it yesterday you went to voluntary fundraiser of the year awards in Belfast? How did the day go? xxxAnnie