I thought I'd share this bit of heartening news.
Following the recent announcement regarding the changes to the Cancer Drug Fund (CDF), a coalition of charities, including Cancer52, has written a letter to Peter Clark, the Chairman of the CDF, to express their concerns. As members of Cancer52, we fully endorse the contents of this letter.
Cancer52 is an organisation representing 80+ organisations, who all have an interest in rarer cancers, including blood cancers.
View a copy of the letter
Oops my reply seems to have disappeared so this will be rushed as I am about to go out and will not have access to wi fi for a while.
I had already read this Annie and am aware that most cancer groups and charities oppose these changes.
Unfortunately I do not find this as heartening as you appear to as their views were not taken into account at any stage during this process or there would have been a different outcome.
This leaves me confused as to what your views and motives really are Annie- they seem rather contradictory to say the least.
I do hope you do not find the Paris conference so confusing as I believe your trip is being paid for by a charity of which I am a member.
I am totally perplexed really when you so strongly objected to volunteers from Macmillan receiving £25 towards a Christmas party as an acknowledgment of all the work they do.You mentioned this on more than one forum and said you found them very wasteful and irritating .
I am sorry but I am not getting it- where is the consistency?
Anne B
Hi Anne
Hopefully I might be able to clear a few things up. My trip to Paris is funded by an organsation called Haute Autorité de santé (HAS). Its purpose is to have an early dialogue on new cancer research to ensure that pharmaceutical companies take account of the perspectives of all those who will eventually be responsible for assessing the finished application for cancer research funding. In doing so they are more likely to develop a project that meets the funder's criteria.
The review of the National Cancer Drugs Fund was conducted over quite a long period and was open to patients, charities, practioners and anyone else with an interest in cancer drugs. The CEO of Target Ovarian Cancer sits on the NCDF panel and has been actively lobbying the case to keep drugs in the fund that will support women with ovarian cancer so I know we've been very well represented.
Charities have had a massive lobby and their views opposing drugs being withdrawn from the NCDF have been taken into account during this process. The outcome of the review is unpopular in many quarters but its conclusions have been based on looking at the bigger picture of all cancers and on recent evidence from clinical trials that indicates some of these drugs are less effective than others. I refrain from having an opinion because I just don't know the facts and I think it would be inappropriate to deviate from a campaign in Wales for fair access to cancer treatments to lobby on behalf of my cancer over and above another. One hopes the process was transparent and accountable but it would be interesting to have some feedback from Target Ovarian Cancer who were involved in it as to how they saw the process.
Moving on to Macmillan the £25 grant offered for a Christmas party was not for Macmillan Volunteers. It was offered to members of a cancer support group. The group discussed it and and there was a 100% consensus that they did not wish to accept the offer and felt it was not good use of Macmillan funds. This doesn't mean to say I'm critical of a massive amount of good work they do. If I am frustrated at Macmillan UK it's a sentiment shared at the Macmillan office in Cardiff that the great weight of the Macmillan UK political lobby is directly solely at Westminster and sometimes changes made in England through Macmillan's lobbying, such as the creation of an NCDF, can create problems in the devolved nations.
I've just returned from a meeting with an AM who chairs our equivalent of the APPG and I've been invited to join that group. I can only hope my contributions will be helpful.
In my view it does not matter so much that HAS is funding your trip to Paris.What concerns me is that you have been invited by a charity to represent patients and you seem to misunderstand many patients views and lack empathy.I feel the bodies involved have shown a lack of discernment on their part and I an beginning to lose confidence in them.
As regards Macmillan you were very derogatory about them and the money spent on their conference and venue.This could have had serious repercussions on the charity and its fundraising.
I notice you have done another u turn on this as well.
As far as I am concerned your inconsistencies still stand.
Anne B
Annie, Can I ask for further clarity. The review of the National Cancer Drugs Fund was conducted over quite a long period and was open to patients, charities, practioners and anyone else with an interest in cancer drugs. However the letter states.
"We are disappointed with the lack of patient involvement and transparency in the delisting process that has recently taken place. The Cancer Drugs Fund re-evaluation process did not allow patients or patient groups to feed in views about drugs, nor was there any consideration of patient experience."
I'm confused did they allow patient input or not.
I completely understand you feel confused. The welter of announcements coming out in the last week or so has been overwhelming.
In answer to your question, 'Yes'. I was sent the URL to their public consultation and completed it as a patient giving my experience and views. It was very detailed consultation and allowed the respondents to attach documentary evidence for their arguments which gave the clinicians and professionals a lot of scope to make their case very clearly.
I don't know by what means the NCDF contacted patients inviting them to complete the survey. I received a referral from the NHS-led Cancer Users Group I attend. I guess they feel the NCDF should have contacted them so they could encourage their members to complete the survey. It just seems so strange they weren't aware of such an important survey because it was available to all on a website. How I wish I could remember which one it was.
Hope this is helful. I think I'm even more confused now. x
a strong letter - let's hope it yields some result
It would be good if the decision on Avastin at 2nd line could be reversed and I'm relieved organisations are taking this on for us. We can hardly go in there campaigning that our cancer drug should be funded over and above drugs for other deserving patients with terminal cancer. It really is a very harrowing time for everyone.
I do not think anyone has suggested that treatment for ovarian cancer should be funded over and above other drugs Annie.The fact is that ovarian cancer is very near the bottom of the pile as regards funding and advances in treatments.
In the post about media attention you implied that you were not in favour of Avastin continuing to be funded for 2nd line treatment stating that it was not all it was cracked up to be.
Have you changed your mind again?
Anne B
Hi Anne
I feel as though everyone is feeling very vulnerable and frightened with all the announcements in the last week and all the terrible battles going on at a really high level which are undermining our confidence in organisations we trusted. Well that's my impression. I thought the NCDF was a responsible organisation that was funding drugs that had been assessed in a fair way to do the best they could in a very difficult situation. All the criticism of it at a high level makes me go through all sorts of horrible thoughts and doubts and there is criticism that they have been funding drugs that are hugely expensive and should not have been included in the fund in the first place.
Hopefully I can explain how I feel. I really have no opinion whatsoever on which drugs should be funded by the cancer drugs fund as I have absolutely no knowledge of the scientific evidence that has been brought to the table. I assumed there would be a fair assessment and fair decisions after the review. At the moment I feel in turmoil and I'm sure everyone else does as there is now criticism for the way the review was conducted and its findings.
I know just how much Avastin was a candle of hope for me last May when I realised it was available and I would want everyone who is medically suitable to try the drug in the hope that it is a success for them. I'm not disappointed it didn't seem to work for me because I was not given any expectation by my oncology team that it would be the miracle we all hoped for.
I only shared my own experience and the feedback that has been coming from my oncologist and various forums. Last year professors at the APPG for ovarian cancer spoke of PARP inhibitors and felt they were hopeful in the treatment of advanced ovarian cancer. There was a suggestion at one conference that if Avastin didn't work then PARP inhibitors might be a better therapy. There was a suggestion from continuing research that Avastin was more effective later on in our treatment pathway.
I spend a lot of time with people suffering with all sorts of incurable cancers because the campaign in Wales puts people in touch with a charity that challenges IPFR decisions and we do what we can to support patients and their supporters through the trauma of the IPFR system. We've had some success in getting people drugs. It's been a brutal experience to work with these people, to learn about their experiences, to understand how ghastly the prognosis is for patients with all incurable cancers and to mourn each one we lose.
Annie, you said that you thought that Avastin isn't cracked up to what it appears to be but it is a long time now since you had that conversation about Avastin with your oncologist and then started treatment and I believe that most oncologists would feel you have been doing very well in terms of time. You have also said that the side effects weren't too bad.
I am so glad that you have done well in this way and that, even now, you haven't started treatment and that you are under Watch and Wait.
You are an example of why Avastin might be given to patients not the other way round.
If you are confused emotionally, please desist from rubbishing a treatment which could save the lives of others and from spouting views which are diametrically opposed to the views of the Ovarian cancer groups you purport to represent.
Sue
Sue, I'm not rubbishing a treatment. I merely say I don't know the science and the medical opinion behind the decisions. I can only tell you my personal experience. You need to seek professional opinion on all these debates. x
Yes you do Annie. I totally agree.
Annie
I wish you felt able to answer questions in a more straightforward way.
You haven't explained why you felt it was appropriate to bad mouth another charity on another forum.
You seem to be backtracking and going round in circles and are so contradictory that I doubt you understand what you are saying yourself.Yousay you have no opinion whatsoever on which drugs should be funded by the CDF yet you quite clearly and at length stated why you felt Avastin should not be available for 2nd line treatment.
If you have so little knowledge on drugs and find the issues so confusing why on earth do you keep putting yourself forward as a patient representative?
Why are you representing patients at a conference in Paris when this is not your area of expertise.
This is a very complex issue with serious consequences for many people.As I have said before it is not just Avastin which is being withdrawn.Cancer survival rates in the UK are amongst the worst in Europe.
We need someone who is passionate,knowledgable and discreet to represent us and deal with these issues.Above all we need sincerity and consistency.
Anne B
An opportunity for you Anne. It would be welcomed in all quarters.
Dear Anne, there was genuinely no sarcasm. Any contribution any patient can make is so much appreciated by cancer charities, MPs, and so many more people. I begin to think the UK is a very special place in that respect.
Of course each one of us deals with the disease in whatever way we can and everyone's contribution is valuable whether it be the personal story or a more public profile. Every one is important. x Annie
You seem to be missing the point Annie.I agree everyone is important.My philosophy exactly as regards to equality in health and treatment . Personal experiences are what make us all unique and are what life is about.
What I am saying is that we need people with appropriate knowledge,skills and experience to undertake the task of representing patients.
Objectivity rather than than viewing it from a personal perspective is essential in my opinion for dealing with such important and sensitive issues.
Anne B
Apologies if you feel I am speaking out of turn but we I think it should stop before it goes any further. We are all hurting enough living with our cancer and a healthy debate on topic is acceptable but feel this thread is getting far too personal for a public forum.
There are many arguments for and against Avastin that have caused quite a stir even locally in Northern Ireland, having stage 4 cancer really didn't want to hear that I can't access it but unfortunately they do have strong evidence to support some of their decisions. That is heart breaking but we cannot hang any individual out to dry over their own personal experience/opinion.
This is the first post from I joined this site that I will be sure not to revisit.
Julie
I don't think I was being personal. I was just replying to a user who has brought up this issue in this public way.
I am sorry that you feel this way Julie.
I feel limiting treatment is a current issue which is relevant to a public forum.
I do not like private groups as they are inclined to be rather cliquey and would rather be honest and open.
I have been very disappointed in the lack of interest / support in this issue.
It affects all of us.Women with cancer should be a united strong force who are prepared to speak up for their principles and against injusticies.
I find it sad that so many people do not look at the bigger picture and only appear to be interested in what directly affects them.
I do not post very often on this group either but I felt this particular issue was too important to be ignored.
Anne B
Feel a bit uncomfortable about the tone of the responses here too. Annie you work so hard for the cause! I am lazy and willing to read about your activities and involvement with interest. I live in Scotland and had to accept Avastin is not an option so need to carry on with other options available. I realise everyone is entitled to their own opinions but perhaps tone it down a bit.
Keep going Annie!!! Xxx
Love Wendy xxx
I feel more uncomfortable for the women being denied drugs now. I suggest you read the threads of the last few days and you might get a bigger picture.
Actually Wendy I feel you are making it personal.
I back principles that I support strongly- not personalities
Anne B
Certainly not intended to make it personal but maybe put it across wrong! I understand your passion so apologise to anyone I may have offended. Not my intention. It can be an unjust world unfortunately but glad we have warriors like yourselves fighting our cause!!
Onwards and upwards.
Love Wendy xxx
Thank you Wendy
Anne B
Cancer Epedemic
new cancer drugs
Random appointment letter?
Received letter from onc...... Not a happy lady today :( 
Ovarian Cancer Meeting
