Drug access for people with secondary Breast Cancer.

[Guest user]

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.

Hazelnut

[Angelfalls]

Thanks for your response.

I just have one comment: I would have thought that equality of access to treatment would have been the mainstay of the Welsh Cancer Alliance's paper (why should I be five times less likely to receive a treatment than someone who lives over the border? That is discrimination and a violation of my human rights!), yet it would seem from your reply that there is uncertainty about whether or not this issue will be included. I really hope that BCC Cymru will push for this to be included.

[HelenL_BCC]

Hi Angelfalls,

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:

http://www.breastcancercare.org.uk/campaigning-volunteering/breast-cancer-voices

Thank you, HelenL 

[June_BCC]

Hello Angelfalls

I will pass your post to the appropriate department for them to have a look at.

Best wishes

June, moderator

[Angelfalls]

Bumping in the hope that someone from BCC might answer my question...

[Angelfalls]

My previous post may have got lost, so can I ask again what BCC is doing to highlight and address the separate issues faced by Secondary BC patients in Northern Ireland, Scotland and Wales, where we've never had access to the Cancer Drugs Fund?

[Angelfalls]

My understanding is that if a treatment is not available in Wales, our oncs can apply for special funding for us to go to England for that treatment, but there is no guarantee that the WAG will approve funding. However, there are a number of people from Wales whose case studies are on the CKUK website, so it must be possible. You just need an onc who's prepared to fill in all the paperwork for you to try and make a case...

ETA: Sorry, obviously those people have had to go through the charity to get their CK treatments funded, so presumably the WAG turned them down...

[horsie5050]

Haya., There are no cyberknife machines in Wales and my Oncologist isn't allowed to refer me to a English hospital should I need it....guess I just go without then!???????

[Angelfalls]

I don't know what the situation is in Northern Ireland or Scotland, but in Wales we have to apply to the Assembly Government for special funding on an individual, case-by-case basis, which can be a very long and drawn out process. For example, I'm currently on a trial for Everolimus and Exemestane, the only way to access this combination in Wales without paying for it. But prior to this trial opening, my onc told me that another of her patients had had to wait 3 months to get this treatment approved on appeal and was unable to start any other treatment during this time as this would have jeopardised her case... And I fear that in the current climate, this is only set to get much worse.

[Guest user]

Thank you for raising this Angelfalls...it was my thoughts exactly when reading BCCs response on my mobile last night but to difficult to respond on that! BCC provide services in Wales and also raise money in Wales...and Im sure in Scotland and Ireland but, like many other organizations are very quiet when it comes to making statements appropriate to areas other than England........It would be interesting to see what the current situation is with regards to funding of drugs not approved by NICE. Im almost certain that access is already much poorer in Wales....similarly to treatments such as cyberknife....But are they kicking up a fuss with regards to that.?......That is not to take away the issue of the drugs fund in England.......
edit....Ive just read the daily mail article!......Indeed to quote them Access to new, non approved drugs in wales five times poorer than in england!.......Has BCC issued a statement on that?

[horsie5050]

Thanks Angelfalls! ( lovely to see your about) In Wales we have a Welsh Drugs Fund which is worse that the English one. I have to pay for my Eribulin. It comes in at 3,900 pounds every 3 weeks - gulp!

[Angelfalls]

Can I ask what BCC is doing to highlight and address the separate issues faced by Secondary BC patients in Northern Ireland, Scotland and Wales, where we've never had access to the Cancer Drugs Fund?

[Anna_BCC]

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:

• increasing patient engagement in the process
• ensuring that patient access to drugs currently available via the Cancer Drugs Fund (CDF) is protected or improved during transition to VBP
• assessment of the value of treatments takes into account the differing goals for people with primary and secondary breast cancer
• recognition of the value of drugs that offer additional months for patients nearing the end of life.

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.

Anna

[Angelfalls]

http://www.dailymail.co.uk/health/article-1257944/NICE-rejects-cancer-drugs-extended-patients-lives.html

See also the above article dating back to 2010.

Since 2011, NICE has rejected seven drugs for Advanced BC, all of which are keeping people stable and with a good QoL in Europe and the USA. Enough is enough!

http://www.newstatesman.com/business/2013/08/nice-snubs-roche’s-new-breast-cancer-drug-hope-lies-department-health

[carrie35]

This is dreadful news, almost back to postcode lottery. I hope there is a better outcome for all

[SP0]

Lemongrove, as always, a wonderful job at raising awareness. You make a great contribution. thanks Sarah

[horsie5050]

Morning Ladies! I think we are just put on this pile of "they are going to sie anyway, what is the point" pile. WE DESERVE BETTER, and BCC has a voice which is heard. PLEASE help us by expressing support for us. xx

[June_BCC]

Morning Lemongrove

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.

Best wishes

June

[Lemongrove]

Bumping so it appears

[Lemongrove]

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)
[color=#0066cc]http://www.dailymail.co.uk/health/article-2352096/Cancer-patients-fear-losing-drugs-f...

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.