Campaigning for Improvements to Drugs Access - Why We Must Not Lose Sight of the Individual

This morning a colleague updated me on the situation of a man called Kevin that we have been in touch with over recent months, whose prostate cancer is terminal and has spread to his bones.

This morning a colleague updated me on the situation of a man called Kevin that we have been in touch with over recent months, whose prostate cancer is terminal and has spread to his bones.

Hearing about his story inspired me to reflect on the open letter to David Cameron that fifteen leading cancer charities (ourselves included) shared with the media on Monday to raise concerns about changes to the way new cancer treatments are evaluated for NHS funding. I also revisited the comments from Andrew Dillon over the weekend warning the Pharmaceutical industry to cut the price of their new treatments so that patients get access.

I began to think about what all this means for Kevin. Kevin has advanced prostate cancer. He is now bed bound, requires morphine to stop the pain and needs a mobility scooter to have any independence. He is hoping beyond hope that his Oncologist will prescribe him a treatment called Radium 223 to give him a pain free last few months with his wife.

However although Radium 223 is now available routinely on the NHS, this is only for men who have already had chemotherapy, which Kevin has never had. And although this treatment has been available through the Cancer Drugs Fund for men who have not had chemotherapy, what Kevin didn't know is that on the 1 April this year his ability to start accessing this treatment via the Cancer Drugs Fund potentially became time limited.

NICE and NHS England are transitioning the Cancer Drugs Fund into the new funding and appraisal process for cancer treatments that recent media coverage has focused on. This new system, which will start on the 1 July, will require the re-appraisal of treatments currently on the CDF, like Radium 223 for use before chemotherapy. Any potential rejection of these treatments will now mean that no-one will get access and there will be no other route to them through the national health system. So in a not so distant future this could leave men like Kevin without any chance of getting the drug they urgently need, simply for being a few months too late in applying.

I realised that in the midst of all this back and forth in the papers, we risk losing sight of the individual. Individuals like Kevin who just want to know if they can get what they need, when they need it. And while this doesn’t mean that men should be able to get any treatment at any price, I believe there is a potential route to make treatment access more likely despite the fact that there are only finite resources available, and that is just as important as the calls made on Cameron and the pressure to cut the cost of new treatments. So what is this?

It's simple. It's flexibility. NICE have already set the precedent here, with their re-appraisal of abiraterone for men with advanced prostate cancer who either couldn't have or chose not to have chemotherapy. In August 2014, abiraterone was rejected for use in these men. It was rejected again in new draft guidance in December 2015, before finally being approved for use in March this year.

So what changed between December and March? NICE displayed flexibility in accepting evidence of the treatment's effectiveness in some groups of men, even though they still had concerns around the lack of clarity about total numbers of men who will benefit. This is something that will become even more important as treatments become increasingly personalised.

And it's also the flexibility to see past the potential imperfections in the economic modelling presented to them around a particular treatment, being able to also take in to account the wider context in order to reach their final decision.

And if NICE can do this now, as they transition to their new approach to appraising cancer treatments, then there's even a possibility that in time, they could also begin to place a greater emphasis on different parameters. For example not just relying on the overall survival that a drug offers, but also looking at for example the amount of time a drug can halt a cancer from progressing. And if so, then the level of clinical benefit they require to justify a valuable use of NHS resources could be measured not just by how long patients will live, but whether they live better lives.

I believe that these simple flexibilities could mean that in the future, men like Kevin could have a better likelihood of getting access to the treatments that can improve the end of their lives. And so I call on NICE to make this recent flexibility a permanent feature when considering availability of new treatments. This will be a critical aspect of making the new reforms to the drug appraisal process work for anyone fighting cancer in the months and years to come.


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