NHS England today closes its consultation on their proposals for a revised Cancer Drugs Fund. We submitted our joint response with Tackle, having first asked you for your verdict. Here’s what we said and just a few of your views that helped form it.

11 Feb 2016

We’ve all heard the saying ‘all that glitters isn’t gold’. Loosely, it means don’t let yourself be dazzled by the shiny packaging – make your decision based on the solid reality of the product. And that’s what we asked you to do with NHS England’s proposals for a new drug appraisal system.

Alongside other cancer charities, we’ve been calling for reform of the drug appraisal system for quite some time. And at the end of last year, NHS England released their proposals for a revised Cancer Drugs Fund (CDF) that also included ways NICE could appraise new cancer treatments differently.

That’s a dazzling prospect and we do support some of the changes. These include quicker NICE appraisals of new drugs and a new option for ‘conditional’ approval, when NICE needs more evidence to be sure of a drug’s benefit in the real world.

Concerns over affordability and access

But we have some concerns too. Under the new proposals, drugs that don’t get NICE approval will no longer receive any funding from the CDF, as they do now. What’s more, the success of the new approach relies on the pharmaceutical industry and the NHS agreeing an affordable cost for new drugs. So in reality, if prices don’t fall, the whole new system will fail and patients will lose out on access.

There is also a real risk that when a treatment gets a conditional approval, only some patients will get access to it. This is because the proposals recommend that NICE sets out the number of patients who can receive it during the two years of further evidence gathering. And with the CDF’s budget set to fall in real terms year on year, we’re likely to see fewer treatments reaching patients through conditional approval anyway, as there will be less money to pay for them.

We think that NHS England needs to go back to the drawing board. This is a hugely complex equation to balance and the solution needs to be robust enough to withstand serious financial pressures. We understand that the price-tag set on cancer drugs is often astronomically high, and agree that these costs need to come down to become affordable to the NHS. But we don’t think that a stand-off with Big Pharma is the right way to go about this. The risk of patients missing out on the drugs they need is too high.

Bring down costs and think about the bigger picture

Instead, the NHS should recognise the high cost of developing a new drug and work with the pharmaceutical companies to help bring this down in a way that doesn’t compromise the safety of the treatment or how well it can be proved to work. This might include things like, for example, finding a way to make clinical trials shorter by finding a reliable replacement for overall survival as an end-point, so researchers don’t have to wait as long to find out the results of the trial.

We also think that NHS England need to think about the bigger picture when they consider the cost-benefit ratio of a new treatment. This means not just considering what the new treatment costs compared to the current best alternative, but also thinking about what long-term savings a new treatment might bring with it. For example, will it mean that less needs to be spent later on down the line on expensive end-of-life treatments, or on managing side effects?

These aren’t easy issues to resolve, but getting patients access to the treatments they need in a way that is sustainable for a Health Service that is facing huge challenges across the board is too important for another stop-gap solution. We need to get this right, or men will lose out.

What you told us about the CDF proposals

More than 50 of you shared your thoughts and concerns with us about the CDF reforms.

  • 44% were concerned that the new proposals would be a step backwards for men needing treatment for advanced prostate cancer. You wanted a more patient-centric approach to the process and feared that costs would dictate drug availability. Your concern was that patient need would be lost in the equation.
  • 38% wanted the NHS to develop a partnership approach with the pharmaceutical industry. This included wanting the NHS to acknowledge the costs the industry incurs to bring a drug to market and to respond with a suitable reimbursement process. You recognised that a public heath service would inevitably have limitations, but said that only a transparent process would ensure fair access to drugs when there may be conflicting opinions on treatment availability.
  • 15% wanted more patient involvement at all levels of the proposed new structure, which would be more meaningful than simply having patient advocates. You thought that men with prostate cancer should be equal partners on decision-making bodies and in the on-going oversight of the new CDF process.
  • 10% wanted frontline clinicians to be more involved in making decisions about the availability of drugs. You felt that although clinicians play a key role in many NICE processes, greater value should be given to independent judgement and professional expertise and experience.

Each of you shared your own experiences of accessing treatments through the CDF and the effect this has had on your lives, too. 

I am currently being treated with Abiraterone. I appreciate that this is an expensive treatment but what I have read and also from my experience, it is effective and certainly gives me hope for a longer life than might otherwise have been the case. I am sincerely grateful to have been given the opportunity to have this treatment, as are my family

I was one of the first patients to be given Abiraterone from the CDF. It was truly a lifesaver

I'm married with four daughters, the youngest 21. Bicalutamide stopped being effective. I was put on Enzalutamide. 14 months on I'm still responding well. So grateful every day for the time it is giving me to enjoy life with my wife, daughters and elderly parents. Precious time to make practical arrangements, and laugh together

Thank you all for contacting us and helping us to make sure our response reflects the views of real men with prostate cancer. We’ve included all your feedback in our consultation response, which you can read in full or keep up-to-date on the outcome of the consultation on our campaign pages.

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