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:
- 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.
- 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.
- 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.
- 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.
- 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