I have just heard on BBC Radio 4 ‘Today’ that NICE has refused Avastin for kidney patients as the cost is over £30,000 per annum and gives only (on average) a couple of months of extended life - the programme spoke to a patient who has lived for over 2 years on the drug(!). Interestingly the NICE guy said that for ‘cost effectiveness’ the figure they put is about £20,000 per year for drugs to be approved although this can be moved for drugs that cost more but deliver significant health/life extension benefits. Not pretty but at least we know what we are up against as I have never heard it spelt out like this before.
I do hope that this ruling doesn’t affect the use of Avastin for BC patients - I thought we had approval for that now? Any ideas?
I heard the same thing Blondie. it makes me so mad the government has made such a mess of this country but when it comes to peoples health they are not interested, surely we are all entitled to care however much it cost and they should step in and sort the NHS out once and for all.
I don’t think Avastin has total approval, or it seems for people paying privately the treatment is available. I mentioned to my registrar about this drug and he said there are no proven results for BC, I’m sure thats not right because ladies on this site are on Avastin.
Sorry to rant I just get so mad when again it comes to money against health.
Oh I get so angry with this so called organization. How they can judge what is cost effective I fail to understand. They take forever to come to their decisions based on figures that are not always correct. Take for example, a person has to go blind in one eye before they can have a drug deemed not cost effective which then saves the other eye. Well I must be really thick because I cant work that logic out can anyone?
Avastin has not yet been passed, but because I have a big mouth and kicked up a media fuss I got it. Please dont get me wrong I am so very grateful and would not be here now without it. I am in the extra time they believe is not cost effective. The results for bc are slow as they dont have many people on it so any of us that are lucky enough need to keep shouting “Look at me I am still here”
If my pct can give it to me and others it should be available to all. Sadly some are frightened of speaking out in case they stop the treatment. It is a disgrace but I will not be bullied.
Sorry I have gone on a bit, but the whole thing stinks.
It will affect BC patients since the drug has not been judged to be “cost effective”, therefore it will not be an option for the PCT and NHS clinics.
I can see a major row brewing since it is not just avastin but other chemos that have been turned down, and for kidney cancer patients it is a pretty disastrous decision.
What I cannot understand is that these drugs ara available ANYWHERE in Europe, Here in Spain, ANYTHING my wife needs or can be of use to her she gets. I wish I could speak to the guy on the TV and tell him to move in with me and get a residents card here in Spain and he would get the best treatments available, with a one year old daughter he deserves the chance ( like everyone does ) to live as long as possible.
Thank god I left bl----dy UK !!
Fight you PCT. Get your consultant to write to them. If he won’t then change to a more sympathetic one. Avastin does not need to be “approved”, its licensed so it can be used, as is the case of those who can get it privately. Make a media fuss. It works. Threaten legal action, the PCT,s are beginning to realise tha legal bills are more than the cost of Avastin. If you are not well enought then enlist the help of others, can I help!!!
Mills
Yes this business about consultants giving drugs to ‘named’ patients is not very clear, not to us patients nor to some of the medical fraternity either I suspect. It stinks that our European member states can get drugs that we cannot but also it is so wrong that the situation is so fraught that only those who are savvy enough and well enough (lets face it it is impossible to fight properly if you are feeling weak and nauseous) are able to pick their way through the system when others can’t.
Can we access other country’s (France, Spain) medical system as they appear to be able to do here (this based on no evidence at all and a bit ‘Sun reader’ sorry)?
What do you have to do - swim ashore without passport or documentation of any sort and claim medical asylum?
This is so wrong and a bl…dy disgrace, drugs that can extend life being denied to people who need them.
Why are we in the European market?
They say Gorden Brown doesnt sleep much and rings people at all hours. Well he hasnt rung me and I left my number in Westminster.
Please could someone advise me if this drug is suitable for someone who is triple negative as I have read in America triple neg women are getting this drug. My onc has told me that there is not enough evidance at the moment that this drug would help me. I wonder if it just about costs and not sure where to go with this.
Hi wooley
just bumped up a thread on Current issues and hot topics re triple neg.
Think this will lead you to the answer, my understanding is that avastin is suitable as one of the ladies I sit next to in chemo unit is also on avastin.
Love Debsxxx
Hi Wooley, Avastin works by stopping cancer cells growing their own blood supply so that they cannot survive.
They use it in combination with chemo where is has been shown to extend time before cancer progresses.
But also you can continue it after chemo like the other targetted therapy, herceptin.
They are using it for colon, breast and now apparently kidney cancer. I suspect they will be testing it on others. It is a therapy targetted at the cancer cells so does not have the side side effects of chemo.
Love Pauline
Thank you both for your response,this drug sounds like something I need to keep pushing on, not sure how though as I have hit a wall with my onc with this one.Why are some women getting this and not others ?
Beatrice and Beth trials are going on in some hospitals, I got it because onc offered it if I co payed and then the rules changed so I made a media fuss long story wont bore everyone with it again. My onc told me last week it is getting more difficult and complicated but hes an honorable man so he is doing all he can. The problem could be solved if they allow co payment but that will cause other problems so its a chicken and egg situation. If you ask 'if I had private medical insurance can I have avastin " They say yes then you have a legal case its not an easy process but if its one you go down if I can help anyone I will.
Avastin is not likely to be approved by NICE, and sutent for kidney cancer has been turnd down flat…if Sutent is turned down avastin doesnt have a chance, Sutent extends life by a yeaar on average for kidney cancer patients. This whole NICE business is an appalling disgrace to this country.
Can you tell me about the two trials you mentioned above,I seem to know so very little and it is not for want of trying,getting any info from my onc is so difficult.
Have been on taxol/avastin combo since March. After 14 tax 10 Avastin I’ve been getting through a BUPA policy through my husband’s work (May and July)was told I by my oncologist that I’d stay on Avastin on its own for maintenance. I then got a phonecall last Monday from the onc. nurse saying BUPA had refused to authorise Avastin on its own. Although they’d been on the phone with them for 2 days BUPA wouldn’t give way and my oncologist is on holiday till next week so my treatment was cancelled at 2 days notice and I’m in limbo until my onc gets back to work on Wednesday. I just hope he’ll be able to get BUPA to agree to it on its own without chemo. All in the middle of a divorce as well!
You sound amazing, Debs from Cornwall. We do need to shout about it but it’s hard when life is already to difficult and stressful. Do you have any idea the number of women on Avastin on its own?
Sorry you have this addtiional stress in the middle of a divorce as well- life really throws us some hard things to deal with…
Insurance companies really are the pits they are always looking for a way out, think you are doing the right thing to get your onc on the phone to discuss this sometimes they can move things. I am sure you have already done this - but havea really good look at the policy wording - word for word. I have had to press PPP three times as they keep trying to cancel my zometa, but its clearly allowed