Thankyou for that info, have read the mail article.... scared already. You are right to bring it to our notice, I don't keep up with stuff like this , just keeping on keeping on going I suppose. Will comment where I can.
I’m sorry for the delayed response. I’ve passed on your post to our team here and they’ve provided a response:
We are very much aware of the disparity of access to non-NICE approved drugs between England, Scotland and Wales and have also been working on raising this issue with the Scottish and Welsh Governments. We highlighted this in our comments on the Welsh Cancer Delivery Plan and are currently working with the Welsh Cancer Alliance (a group of influential Cancer Charities in Wales) to develop a paper highlighting the areas the Alliance feels are a priority for delivery within the Cancer Delivery Plan. We hope to include access to new drugs in this paper, but this is not yet finalised.
In Scotland we contributed to the recent government consultation on access to new medicines, again highlighting the discrimination faced by people in Scotland with breast cancer who have no way of accessing none SNC approved drugs.
I’m afraid we can’t comment on Northern Ireland as we don’t currently undertake policy work there.
We appreciate it isn’t always about access to new drugs, but so often new drugs are developed for use in a metastatic (secondary) setting and are not generally not approved by NICE or SMC that this means a very real reduction in access to treatment. If these drugs were approved, or available on an individual patient basis if a doctor believes they will be useful, then access would increase.
We will continue to highlight this issue whenever we can and work with other charities as often as possible to bring about the most effective changes.
I hope this helps, Angelfalls.
Apologies if you’re already involved, but I wonder if you’d also be interested in finding out more about our Breast Cancer Voices scheme? It’s an opportunity to ensure that the views of those affected by breast cancer are represented:
Thank you, HelenL
I will pass your post to the appropriate department for them to have a look at.
We totally agree Lemongrove that the future of the Cancer Drugs Fund and Value Based Pricing are very worrying and having looked back at the beginning of our blog post can see why you think we are saying that the government plans are suggesting they will increase access when in fact we are very concerned they won’t. The wording we used about value-based pricing (VBP) aiming to give NHS patients better access to effective and innovative medicines, is wording we have heard used by the DH when they talk about it. Our report in fact highlights our serious concerns and the views of our Voices on this issue as well as recommendations to ensure the new system does not discriminate people who are currently unable to access drugs or rely on the cancer Drugs Fund for treatment, particularly those with secondary breast cancer.
Our recommendations in the full report include:
We are now working on some more in depth interviews with several of our Voices to further explore their views on the how decisions for drug pricing and access should be made, and are confident this will further highlight the potential for greater (not less) discrimination, for people with advanced disease in the current plans for the new system.
Just to let you know that your post has been passed to the appropriate team. I'm sure they will be posting a response as soon as they can.
Some people may be aware that the Emergency Drugs Fund (which has given access to thousands of patients who would otherwise have not received certain drugs), will end in March 2014, and will be replaced by a system known as Value Based Pricing (VBP).
BCC have written about this and said, "A new system of pricing branded medicines, known as value-based pricing (VBP), is due to start from January 2014. The aim is to give NHS patients better access to effective and innovative medicines. With respect, this is nonsense, and a number of cancer charities have voiced extreme concern about VBP. because essentially the list of drugs available will be based on value for money. The concern is that this will inevitably work against patients with secondary BC, because the drugs we require are usually quite expensive, and frequently perceived as not providing enough benefit in terms of survival advantage.
As much as I hate the Daily Mail they have published a very good article about the effects of VBP (please see link below)
I would urge people to read BCC's article entitled Drug Access for people with secondary Breast Cancer, then read the Mail article above, and make up your own mind.
Personally I think BCC should stop cosying up to the powers that be, stop pussy footing around with issues like body image and start running some hard hitting campaigns that actually deal with the vital issues crowding in on us.