Avastin availability

Public Archive
1

Hello all
For the past 12 months I have been pestering my onc for avastin. In May this year he let it be known that a couple of patients were paying privately for avastin while receiving their regular treatment on the NHS. We asked how much it would cost for my treatment and he said around £60K. We went home and put our house on the market and started to save like crazy. At my December appointment I told him we had £10K saved so how much treatment would that provide? I felt sorry for my poor onc I saw his face drop - he explained the “powers-that-be” would no longer allow a contribution (called co-payment) for avastin and I would have to be a private patient and pay for EVERYTHING - chemo, anti-sickness, bloods etc . You all know how many drugs and procedures we have to have endure.

I am absolutely gutted so I decided to take action and I am now wanting to start a campaign that all drugs be available to all patients. We have got to take them to task on this so anyone interested in joining in, you are more than welcome.

Obviously Christmas is here so everyone will be really busy with family plans, and for some of us this will be our last Christmas so all us able-bodied folks (chemo-affects allowing) must get together to take the government to task and change things for future cancer sufferers. I do not want to sound like a suffragette but I really am determined to help change things.

We will start with avastin and work our way through the alphabet !

Huge love, Debs in Cornwall

Some of the coverage we have got so far…

news.bbc.co.uk/1/hi/england/cornwall/7151328.stm

2

I am in the same situation as you. I have questioned the right of the Trust to make me pay. I have had extensive coverage in the national and local media who are supporting me. It has gone as far as the minister for health who supports the policy. The say he wanted to prevent a 2 tier system but it already exists. I was alowed to pay privately for a scan and still be an NHS patient but cannot do that with Avastin. Talk about double standards. There is so much more I could tell you but it will take pages. The NHS are on sticky legal ground. Like you I would like everyone to write to their MP to bring about change and also the papers and TV. I am getting trememdous support but the more the merrier, it will make our case stronger. We should not have to pay at all. The coverage I have had so far is, Breakfast TV, Today programme, BBC 5 Live, Sunday Times, Daily Mail, News 24 and local papers and TV. Do you have any suggestions on how we can consolidate our fight, anyone else want to join in. Please contact me
Mills

3

Tha Sunday Times article last week is what spurred me on. I have been contacted by the same journalist as you and they are running a follow-up story this weekend. Drop me a line to my email and let’s talk…

4

Debs
Just wanting to wish you every success with your campaign and news coverage. It’s appalling that you are in this situation and although most of my treatment has been on the NHS I had a private appointment with a consultant and also had my biopsies sent away to be analysed privately. So if I can pay for that part of my treatment I don’t see what the difference is you paying for some of your drugs!

Rebz

5

Good Luck Mills and Debs…I guess you already know about this Avastin trial but just in case click on the link and it’s trial 6.
cancerhelp.org.uk/trials/trials/selectsearch.asp?cancer=68&location=0&objective=0&phase=0&searchtype=select&treatment=15
There’s also an Avastin trial taking place at Addenbrookes hospital, Cambridge…I think the contact is Dr Wilson. Not sure how long the trial is open for.

6

Hi Belinda

Thanks for the reply but I have already tried that avenue but according to my onc I have had too much chemo to qualify.

Love Debs in Cornwall

7

Hi Debs
like Rebz I also saw a consultant privately and paid for some tests privately. In terms of principles and norms for treatment there is no difference between what we did and what you are trying to do. Good luck and let us know if we can help.
Jo
xxx

8

Thank you all for your good wished. it is obvious from what you have said the NHS has double standards and encourages a 2 tier system. They deny this and quote their policy, which they hide behind. Please make you views known publically, either in the press or your MP. We need to make a huge fuss. I now its hard, if like me you are undergoing chemo and not feeling your best.
Thank you again and have a Happy Christmas and New Year
Lots of love
Mills

9

Just wanted to add my support - I’ll also write to my MP. I’m one of the lucky ones who have been able to get Avastin privately (my hubby has private medical insurance through his work). I also work for the NHS so know more than a little about the decisions coming down from the “powers-that-be”.

Good luck and keep us posted so we know how to help.

Kay x

10

You might want to look at the thread on the forum - Current issues/hot topics: US FDA Rejects Avastin for Metastatic BC

It would appear that thoughts are changing regarding the efficacy of Avastin for BC. I don’t want to crush hopes, just that you might want the information. Note also that the vote against Avastin was only 5 :4 and that there is nothing to say that something might come of Avastin with something else or a variation of Avastin in the near future.

Thinking of you
blondie

11

Hi debs -
I also live in Cornwall, but the “Forgotten Corner” of the South East, on the Rame Peninsula near Millbrook, Kingsand and Cawsand. Although living in Cornwall I am being treated for breast cancer and Crohn’s at Derriford Hospital in Plymouth. My bc nurse told me when first dx that it was then (5 yrs ago) only one of 6 breast care centres of excellence. I have had the very best of treatment there.

Talking of the “two tier system” - three days before I was dx with bc (a recall from a normal 3 yrly mammo at a travelling unit) I was having a serious flare of Crohn’s and my GP suggested referring me to a new Consultant Gastroenterologist, that she had worked with at Derriford as a locum. She also had Crohn’s. On the NHS I would have had to wait some 6 months for an initial appt with him, so I went privately to see him at the Nuffield in Plymouth. He instantly transferred me over to the NHS for my Crohn’s and said to stop by his office the next Monday to get an order for blood tests, as I was already going to Derriford that day, and it is a 2 hour journey one way.

Crohn’s is not usually life threatening as bc is… so could one of these jobsworths at NICE who decide whether we should live or die, explain why I could get transferred instantly from being a private patient, to the NHS? My Crohn’s medications (I am on weekly self injections of chemo, methotrexate) plus 3 other daily drugs,monthly blood tests and B12 injections at my GP’s surgery, regular 3 monthly visits with my gastro, constant colonoscopies, endoscopies, barium follow throughs, and a recent MRI for a small bowel stricture must cost a figure I daren’t even think about. Perhaps we Crohn’s patients are so few the government doesn’t worry about the cost to the whole health service. I just know I am grateful that it is all free.

I am absolutely incensed at the denial of Avastin to bc secondary patients. I am coming up to 5yrs from dx, and worried about my review in January as my bc breast is hot, pink and very swollen and concerned it could be ibc. I do therefore worry what options are open to me after nearly 5 yrs on Arimidex.

What can I do to help? Could you get transferred to Derriford? I can give you the names of my brilliant surgeon, and the Oncologist I had during chemo, although I don’t see him any more as he discharged me after chemo and rads. I understand he also works at the Royal Marsden in London.

I would be more than willing to tell the story of my transferral from private health care to the NHS sector if it will help. Having always been under the NHS for some 37 yrs for Crohn’s I don’t think they would dare to not treat me. You don’t mess with Liz, as my husband says. I have had to fight most of my life to get proper care and attention for Crohn’s, and I don’t believe that bc is any different. You just have to stand up for yourself. We are our own best advocates.

As the Tesco advert says: “every little helps.”

Take care,
Liz.

12

I am sure I have heard one of you on radio 4 - so well done bringing this issue out. Its breathtaking hypocrisy saying there is not a a two tier system…I would prefer to categorise it as an opportunity for a co-pay as I come from US background Every time I go for a scan as I am being treated privately I meet someone who is paying out of their own pocket as they are concerned about the queque a their hospital. They then return with the scan. This decision is simply to keep the lid on a cancer drug, part of the army of tactics that the NHS has to do this.

But there is a problem with Avastin and Breast Cancer and it is a pretty big problem. I have been denied the drug not on cost grounds, but on grounds that it is not effective. I am very upset about this, but if you read the US decisions you can see what is happening here.

with best wishes,
Catherine

13

KatherineM
As far as I know the FDA voted by 1 vote not to use Avastin as first line treatment, not because of its effectiveness but because of the side effects or have I misunderstood. What were you told. I would like to know more. I am the one you heard on radio 4 and am still hoping the Avastin will become available to me. Thank you for your comments on the hypocricy of the NHS Happy new year to all of you
Mills

14

Hi Debs and Mills

I am sorry that you are both faced with such awful decisions. It seems to me that there is incredible hypocrisy and double standards involved in the decision not to allow you to fund that part of your treatment with avastin if this is what your oncologists are recommending and what you want.

The FDA decsion was take on a 5 to 4 vote. I understand that in trials for advanced breast cancer avastin was shown to increase progression free survival by 5.5 months but to give no benefits in terms of overall survival. The FDA panel considered that the benefits were therefore outweighed by some of the side effects (e.g. risk of stroke.) I got this infromation by following the link on another thread started by ChristineMH.

I know there are many women in the US still getting avastin as a treatment. Also I know that some women in the US with triple negative disease believe the trial results should have distinguished the results on er+ and pr+ and er- and pr- tumours. I don’t know. I do know the desperation of wanting to find a treatment which works, but sadly my head tells me that sometimes we have to accept that in the present state of medical knowledge no drug is going to do that.

best wishes to you both

Jane

15

I simply cannot understand the refusal to allow people to pay for avastin in addition to ordinary chemo. I have been receiving avastin and chemo privately through my work health insurance I see no reason at all why I, or anyone paying for part of their treatment themselves should not have the right to receive the rest of the treatment on the NHS. We all pay contributions to the NHS - what right has anyone to deny us treatment?
as for the two tier system - it may be wrong but it exists already. I know the treatment at my local NHS hospital (Addenbrookes) is excellent, but there are ‘extras’ available to private patients: comfort, receiving chemo through a subcutaneous port rather than trashing my veins…
Just in passing - I recently returned to UK after living in France for 15 years. They have an excellent state medical system but a very large proportion of people also have private health insurance. The difference is that everyone uses the same hospitals and doctors - the insurance just pays the proportion of the care which is not funded by the state. eg cancer, as a lifethreatening disease is 100% state funded, but you can pay for a private room, a more luxurious hospital etc. If your illness is less serious the state will pay a proportion of the care and your insurance picks up the rest. This also means that people with a background of serious illness can sill get insurance.

16

Hi Mills

Just wanted to pick up here as I posted earlier and I discussed this again with my onc on Christmas Eve and saw your question Jane has pretty much picked up all the points he made…except he really wanted me to know that the US decision is not based on money, its based on risk versus benefit - it is not a NICE type decision. Other point he made, and I may be getting confused is that it increases progression free survival when its taxol plus avastin compared to taxol…so benefits are limited if you believe that there are better chemos than taxol.

(Whether it should have been more clearly defined between ER + and ER- is a good point, these things arent perfect, and I am the last to defend it for the sake of it) I still would have liked a shot at this drug, really,but I can accept the rationale for his decision, and list of side effects pretty seriously frightening.

Best to you all in this…I really hope you can get somewhere. This is a huge issue you have raised, covers far more than avastin really, and I think they have jumped on this as it is an expensive cancer drug , but what next?

Catherine

17

Hi to Mills and all those who have contributed.

Mills, as I’m in the South West of England chances are you didn’t see the news coverage down here in which Treliske Hospital medical director Rob Pitcher admitted three patients have had their co-payment arrangements honoured. So maybe you could use this info to help your campaign ? I really hope so, if it can happen here why not in the North East ?

Thanks to everyone for all those spicy examples relating to co-payment, it just goes
to show when it suits them it is OK and when it is not, it is tough on us. I will use some of the information wisely, it may embarrass a few MPs who may be unaware that co-payment is happening under their noses.

Happy New Year to you all,

Huge love

Debsincornwall

18

Anything I can do let me know.

I

19

Hi fayjay69 Thank you for your support. You could contact your MP or mine who is William Hague . The issue needs to be kept in the public domain and polititians need to make change happen. I don’t know what part of the country you are in but it would be interesting to find out what your local Trust/PCT views are and if anyone in your area is in the same situtation as me.
Hope you all had a good Chrsitmas and I wish you all a Happy New year
Mills

20

latest update. Prof Ian Smith of the Royal Marsden has come out in our support. So has NHS executive, Patient’s Association, Doctors for Reform and Saga and another cancer specialist whose name I cannot remember. I just had chemo and the brain cells are not working. Hope everyone is in good spirits and not suffering too much. Good luck to all with your treatments
Mills