Tag Archives: NICE

POST 30 – Keep calm…and try not to panic! The Cancer Drugs Fund

Those of you who follow me on Facebook may have seen my recent post linking to the fact that NHS England has been discussing and consulting on the future of the National Cancer Drugs Fund (NCDF).

This fund currently allows access to drugs that have not been rejected by NICE for not being deemed cost effective. A no from NICE normally means that the benefit, or the life extension the drug offers, is not enough to justify its cost.

The Cancer Drugs Fund was set up largely as a ‘political fix’ to the increasing number of NICE no’s and was only supposed to be in place for two years and to be a bridge to a new pricing mechanism called Value Based Pricing (VBP). At the time, VBP was being heralded as the solution we had all been waiting for to improve access to new treatments.

Through the CDF, cancer patients have been able to have drugs that otherwise wouldn’t have been approved by NICE. For many of my myeloma friends, it has given them access to treatments which in many cases have been their last option and literally helping them to keep them alive.

However, the increasing cost of new drugs has put huge pressure on the CDF and it has been predicting massive overspends. What is more, without having assessed drugs approved on the list for cost effectiveness, there is also growing concerns that a huge amount of money is being spent on some drugs with little or no benefit. The fund also needed to be extended because the new VBP system was scrapped with no decision on what should be done instead.

All of this prompted the recent review which has resulted in a number of changes to the fund including the news that a large list of drugs currently on the fund has been put together for a reassessment which for the first time would include an assessment of cost.

So, this weekend has seen the myeloma community (and probably the communities of many other cancers), come to life as this list included 3 myeloma drugs. The prospect of these drugs coming off the list is very worrying and work needs to be done to make sure that this does not happen.

However, all may not be lost as two of the drugs are currently being assessed by NICE and hopefully they will say yes. Failure to get these drugs approved by NICE and/or keeping them on the CDF would be a huge step backwards when it has seemed like we have taken so many steps forward in the last few years.

If I’m honest, whilst I can see both sides to the argument (that partially comes from having a husband in the pharmaceutical industry!), I am worried. Until now I genuinely felt confident that even when I relapse that there would be many options out there. And if NICE deemed that option to be too expensive, there was an alternative means of getting access to the drugs that may give me longer with my family.

Until this has all been bottomed out, there are a lot of people out there that are very, very concerned.

I think that there are some important things though to remember in all of this though:

  1. There is limited money available in the NHS

Whether it is for drugs or anything else, we only have a certain amount of money. It is the job of the government, NHS England and NICE to try to work out the best way of allocating that money and to be honest, I wouldn’t like to have their job.

What is important to one person isn’t to another. Is it better to prolong the life of one person at the expense of being able to help numerous other people with lesser health issues?

Even I can understand that if the NHS was having to pay for my drugs (at approximately £450 a day, 14 days a month) that it is madly expensive. I am lucky that I receive them on a trial and so the drug company provides them for free. But that is a huge amount of money for ‘maybe’ keeping me in remission.

Having the NCDF as an ‘open ticket’ isn’t a long-term solution. What incentive is there for drug companies to lower their prices if they know that the NHS will pay via the CDF no matter what NICE decides. The process needs to be joined up….it’s just a question of how.

  1. Drugs are profit-making businesses accountable to their shareholders.

Whether we like it or not, pharma companies are out to make a profit and in doing so, in most cases, will price their drugs to the maximum the market will withstand. It is also a risky business with lots of failure and investors need to wait a very long time to get a return as a consequence.

There has to be a balance here in some way. These companies have to make their money back before they lose their patent (that stops other companies creating the same drug). Perhaps if they were given longer terms for this, they would be able to charge less for the drugs and they would become more cost-effective.

  1. It is nearly impossible to draw a line of where different stakeholders deem a drug to be valuable.

Where and how do we draw that line? How do we say that 3 months life extension isn’t worth it for that patient who just wants to see their daughter get married, see their first grandchild born, or perhaps just wants an extra 3 months with their family and friends.

I like to think that I would understand if someone told me 3 months wasn’t good enough to justify thousands of pounds. In reality I doubt I’ll feel that way if and when it comes to it. If you are a patient coming to the end of your options, the idea of saying goodbye sooner than you need to must be nearly impossible to come to terms with. I keep hearing people asking how you can put a price on life.

  1. The CDF was and remains a political fix

Like it or not, this is partially a political game. The government needs to be seen to be looking after its money. And at the same time, 5 months before a General Election, they won’t be wanting to upset the general public, who they rely on for votes. Sadly it is us patients that are caught up in the middle not knowing what the future holds for us.

  1. We are still early in this process

Whilst there are 3 drugs that are potentially to be reviewed, that doesn’t mean that they will all be withdrawn from the list of available drugs. I don’t think they have published details of what they’ll be looking at, but it may be that when they are assessed, they are deemed to be important enough to myeloma patients to keep on the list or the drug company may be asked for and agree to a discount on the price.

The myeloma groups on Social Media are still buzzing. People genuinely feel like their hope has been totally wiped away but all is still to play for and something needs to be done to resolve this, and quickly.

My only hope is Myeloma UK….no pressure there then guys! I truly believe that we have an organisation supporting us that is passionate about what they achieve. With a CEO who set the charity up, and the Chairman having myeloma, they genuinely have a desire to make things work for us as patients. Having worked for a charity myself, I know that there is often stuff going on in the background that none of us get to see…but I know that I would be gobsmacked to find that they weren’t working tirelessly on finding some resolutions.  Myeloma UK has always said that the NCDF isn’t sustainable and I think they’re spot on. You can’t just throw money at something without addressing the real issue. The real issue here is for the government and pharmaceutical companies need to both be making compromises. And hopefully the cancer charities affected can help them with this.

It is early days with all of this. We are all a bit shell shocked at the moment. But I think we need to try to be patient and see what comes out from it. That is easier said than done sometimes though….I think the people I have talked to, including me, just want to be able to be proactive. We want to have some control and the hard thing, is like with our cancer, I’m not sure that we do. But that means that we need to have faith in the people that can and do influence – and in my opinion that means I need to have faith in the charity that supports us….which I do.

In the meantime, I am just really thinking of those people who are scared stupid at the moment. Those people who know that this is very likely to affect them. No matter what I’ve written above, I know that it is bloody scary. We all need to be there for each other…luckily I think the Myeloma community does that amazingly well.


If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either

go to http://www.justgiving.com/Deb-Gascoyne


text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

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Post 14 – The future is bright, the future is orange

For a while now, I have wanted to write a post on the future for us living with my myeloma. I’ve put it off because it really is a hard one to write, especially when I have lots of friends with myeloma, all of whom are at totally different stages to me. What is one person’s hope, is another’s regret and the last thing I want to do is to make anyone sad or angry with what I write.

But recently I have been made to re-evaluate my thoughts on how we, as a family, focus our life moving onwards, on the future, and also on how I want to focus my fundraising efforts. I am giving up work temporarily, we are considering moving house/ extending our existing house and both of these things have meant that we have had to review where to live and what is needed. Only two years ago, I was adamant I needed a downstairs bathroom/bedroom available to me for as and when I relapse and my treatment/body gets in the way of the stairs! For the first time, I have stopped thinking like that……for the first time, I have begun to feel like I could still be standing strong for many years….maybe even so far as to see the children leaving home. So all those decisions that have, for the last 5 years revolved around my myeloma, are thankfully being reviewed and adapted. My myeloma is no longer the focus….we are…..and I can’t begin to tell you how refreshing that is.

When I was diagnosed in July 2009, our whole life turned upside down. I had been told I had a cancer that was not only incurable, but that only had an average life expectancy of 2-5 years assuming you believed everything that you read on google. I wouldn’t see Rebecca and Sam go to secondary school, wouldn’t see them through those dreaded teenage years (!) and I possibly wouldn’t reach my 10 year wedding anniversary with Nick. It was awful and a total shock. I genuinely didn’t believe that I would be here today writing this blog, despite talking to people who had lived longer and were doing ok. I wasn’t going to be that lucky.

But then I started my fundraising. I couldn’t just sink with the knowledge that I had suddenly been faced with…and I needed to do something else. And in the early days, my fundraising was very much focused on the ‘woe is me’ story that I honestly believed. I would make sure people understood that I was only 34, that I had two young children in primary school, that my life expectancy was short….and I would hope that they would support my fundraising efforts to help make me feel better. And they did….and I apologise to all of you whose emotions I played on…despite the fact I didn’t realize that was what I was doing at the time. I honestly believed every word that I said. And to an extent, I suppose I wasn’t lying as for some people who have a more aggressive form of myeloma than me, all of that could well have been true. I have been amazingly lucky.

I am so pleased that things have changed now. Don’t get me wrong. Myeloma patients are NOT out of the woods. It is STILL incurable. Much research is STILL needed. But 5 years down the line, I am still alive and I am still in remission nearly 3 years after my Stem Cell Transplant. I know how lucky I am. Had I been diagnosed with myeloma even 10 years ago, my future might not have been so bright. I have friends who are dealing with their second and third relapse and desperately hoping that research will bring out new options that will, to be blunt, keep them alive. But I am lucky in that, if I can stay in remission for a couple more years, there are things ahead that are very, very positive. For the first time, the last 6 months have truly made me believe that there could be a future ahead of me….and that is exciting. I am not sure exactly what this new research means, and I need to find out more….I’m still not sure that the idea that I will still be alive at 60 is a realistic or optimistic one – but given that I hadn’t expected to make my 40th birthday in 2015, I think I’m allowed to pretty chirpy! And maybe in 10 years time, I’ll be writing about how I’m looking forward to being 70!

So what is it that is giving me hope. Every year, new drugs come out that can help myeloma patients, whether through a trial or through NICE having approved them. Each time a drug is researched, trialled and successful, it opens up new ‘menus’ of drug regimes for patients which means that one option stops working, a different drug can be tried, or a different concoction of drugs can be put together. From what I understand, where 10 years ago, there were only 3 or 4 main drugs used, now there are far more available to many MM patients.

But as genetic studies continue there are much more exciting things that are coming to the forefront. I think that although a cure still isn’t on the immediate horizon (a recent infoday suggested perhaps a 10 year timeline), whilst DNA testing continues successfully, there are still things coming up. Things that hopefully could change the life of myeloma patients. ‘Monoclonal antibodies’ are one of these things. I really hope that I am not getting my hopes up incorrectly. As I have said many times, I’m not great on the science side of things. BUT, that said, these antibodies really do sound interesting. My understanding is that the drug attaches itself to the myeloma cells, and then almost shouts out to the immune system to attack the cell. And that this could see a totally different way of attacking myeloma cells and bringing a different conclusion for people like me.

This has been a hard post to write. I suppose I’m trying to convey a hope that things have changed dramatically since when I was diagnosed 5 years ago. And a real belief that this is the case. I desperately hope I’m right.

It would not only give me peace for me and other patients, but also for our families beneath us. So, as a famous telephonic company has as their strapline….I truly believe that ‘the future is bright and the future is orange’…thank you Myeloma UK and all those researchers out there aiming to ‘make myeloma history’.


If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne


text ‘DEBG99 £X’ to 70070 e.g ‘DEBG99 £40′ if you want to donate £40


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