The Cancer Drugs Fund review results

[TheOvacomeTeam]

January 2015

The Cancer Drugs fund (CDF) was set up in 2010 to provide funding for cancer drugs which have not been approved for NHS use England by the National Institute of Health and Care Excellence (NICE). This may be because the drugs have yet to be reviewed, or that they have been reviewed, but rejected. Thus far it has provided access for one ovarian cancer drug, Avastin.

In December the CDF met to review some, but not all drugs on its list as well as to consider a number of new drugs that pharmaceutical companies had submitted for listing. For ovarian cancer the results have been very disappointing. Whilst Avastin in the first line setting was not reviewed, and therefor remains available to eligible women, Avastin’s availability for use in relapsed disease has not been approved. Similarly Trabectadin for relapsed disease is not approved. Olaparib for maintenance treatment of women with a mutation of their BRCA gene was withdrawn from the process and is therefore unavailable. It is important to note that these changes are to implemented in March, and that women currently on treatment will be able to complete the planned course.

Whilst Ovacome understand the financial challenges facing the NHS and the issues of drug costs we believe that the current appraisal system is not fit for purpose and needs urgent reform. We are working with other organisations, as well as industry and regulators to understand how fair improvements can be achieved and how women in the UK can access the latest treatments.

There remains the possibility of accessing non listed treatment via individual funding requests, and we will continue to , as we have in the past, promote awareness of these mechanisms to the clinical community.

If you have any questions or concerns please contact the Ovacome nurses on 0207 299 6650

[TrishLey]

I am shocked about this. For all women who may need the treatments right now, for the women on the treatments right now and for the all the women who will need the treatments in the future, this is unacceptable. I don't live in the UK but I am still outraged.

[Jackie0]

Thankyou Ovacome as always for keeping us up to date and fighting our corner.

Your comments are acknowledged, as are those of the Cancer Drugs fund.

As a relative newcomer to all this, I am at a loss to comprehend why all these N.H.S costs have to be constantly separated out and justified. Whether it be the cost if a 49stone man as recently screened on TV,having a gastric band at humongous costs, and sadly loosing his life, or a life long drinker having a liver transplant...?.

We are just a minority of ladies who make up the. Backbone of our family, who want a chance to live and support and love our families.How can the pen pushers deny us our right to life.

Also the very greedy drug companies need to take some responsibility here.Whilst I appreciate that millions are spent in research, are the current costs of chemo really justifiable?? I have known several drug company reps who drive round in nothing less than Mercedes.

The NHS should be shopping around and doing more bartering with the drugs companies.

We are talking about people's LIVES here they need to wake up, it could be their mothers,daughters grannies!!!!

J.O

[thesilent1 in reply to Jackie0]

Well said. Ann xo

[kazrazmataz]

WHat is the current appraisal process and why is it not fit for purpose. Also what should the appraisal service look like to make it fit for purpose. THis question is for OVacome and what can we do to campaign for change. Maybe we can all do something like write to our MP's, get some publicity using positive Avastin stories compared with current stories of ladies who have say had the drug to start 2015 and ladies who have just been pipped to the post and what they have missed out on using a story like a 4 year remission as well as a focus on what the average extra disease free progression has meant for someone like the birth of a first grandchild or a son or daughters wedding. I can visualise the advert now in my head with just a handful of real life stories highlighting what the decision means in human terms to us and our families. we could post it on YouTube, advertise it on social media and go viral!

[TheOvacomeTeam Partner in reply to kazrazmataz]

Hi,

Thank you for your question. We will do the best we can to answer. Some time ago we wrote about the drug approval process which can be seen here:

healthunlocked.com/ovacome/....

The reasons we feel that the current system is not fit for purpose are many and various.

It allows for discrimination across the regions (The CDF is funded by NHS England).

The current system does not take real life experiences into account.

The system appraises drugs, and then funds them if they are for cancer even if the drug failed the appraisal.

The current NICE process uses metrics which are designed for measuring quantifiable things like a month of life, but is recognised as being very poor at looking at things like quality of life.

We believe that NICE over reaches its remit.

We have experience that it is not independent, as claimed, and as it is supposed to be, rather it takes direction from Government.

It bends its own rules when it suits them to do so.

In the understandable rush to get drugs into the NHS it uses the earliest available data, but then waits years to re-appraise.

The committees which make the decisions do not have experts as part of the committee, rather they invite a few experts to answer a few questions, the rest of the meeting is closed so we do not really know why they make the decisions they do.

As for the CDF, there are obvious issues such as fairness to all, and geographical variations, but also the process was too opaque, and unbalanced (For example, they were appraising drugs which had not been to NICE along ones that had and consequently price points may not have been confirmed)

We believe in the importance of a reimbursement authority, such as NICE. We recognise that theirs is a challenging role, and that they have to a great extent been undermined by the CDF, however they need to change; to become more transparent in the practices, to give less priority to the academic myopia of the Heath Economists, and undertake patient engagement that actually counts. They need to use new measures which include the value that access to treatment has (For example, Is there a time when this might be the only treatment available? That is hugely valuable, but not counted)

We have been engaged with NICE since its beginning, and continue to be so (They are currently looking at Olaparib and we are submitting to them on this)

We continue to campaign for change, and have held lobby events in Parliament. A copy of the report is here:

ovacome.org.uk/ovacoming-to...

We are at the first Dept Health meeting today, and will learn more about why they made the CDF decisions that they did. Once we have a clearer idea of the whys and wherefores we will let you all know. (The advert sounds fantastic )

[ladygooner-uk]

Is there anything that we, as the affected people can do about this?

[TheOvacomeTeam Partner in reply to ladygooner-uk]

Hi Ladygooner,

I have posted a bit more about it above, but to elaborate - There isn't anything to be done right now. We are going to a meeting at the DH this afternoon and if we believe there are grounds for appeal etc then we will take them, and let you know. If there is anything we can think for for the community, we will also let you know - I suppose we could do something for the election....

We have invited someone from our parliamentary advisor's MHP to speak at Members day (16th May, London) so I would recommend coming to that if you can.