Survival rates are stalling – we need a new strategy for tacking rare cancers
The type of cancer you get makes a huge difference to your chances of survival. Significant advances have been made in the treatment of many of the more common types of cancer. Most melanoma patients, for example, can now expect to live for more than a decade after diagnosis, with 10-year survival rates in England and Wales exceeding 90 per cent.
As a recent study by the London School of Hygiene and Tropical Medicine highlighted, however, there has been little improvement for those affected by rarer cancers, impacting the oesophagus, stomach, brain and lungs.
My own father-in-law, Ivor Hutchison, was diagnosed with one of these rarer cancers - glioblastoma, a particularly aggressive and fast-growing type of brain tumour. Despite being fit, active, and otherwise healthy, he passed away just six months after his diagnosis.
The “rare cancer” label is actually a bit of a misnomer - one in three of us will know someone affected by a brain tumour at some point in our lives. These cancers are therefore not particularly rare, and have some of the lowest survivability rates, yet receive just a tiny portion of national cancer research funding. Brain cancers, for example, receive just one percent of this funding, but are the most lethal cancer for under 40s.
This funding gap means that rare cancer patients and their families often, rightly, feel like their diagnosis is effectively a death sentence. I do not believe this needs to be the case. Other countries are driving research into new therapies and treatments far more effectively – and, with a few common-sense tweaks to our current healthcare system, we should be able to adopt similarly innovative models.
In order to bring this change about, we need new legislation. This is why I entered the Private Members’ Ballot, and when successful, I immediately began to consult with charities and health experts to identify where Government could meaningfully intervene to help improve treatments and life expectancy for rare cancer patients.
They helped me identify three key areas where we should focus our attention: advocacy, access and research. On the advocacy front, it is clear that we need a rare cancers champion – somebody, within the healthcare system, who the buck stops with when it comes to rare cancers, and who can act as an effective liaison between policy makers, researchers and patient groups.
In terms of access to trials – a historical blocker to innovation in cancer treatments – we need to remove as many of the barriers to participation as possible. This can, broadly, be achieved through a tweak to the clinical trials register, making it opt-out so that researchers and patients are connected much more seamlessly. This will mean that patients in the UK will be more likely to be the first to benefit from breakthrough treatments.
Lastly, to boost the funding for rare cancers research, we need a review into the incentive models which are working in the US and throughout Europe. Commissioning this review, and setting hard deadlines for the report stages, along with clear accountability to the health secretary, is the first step in transforming the current system which is failing patients.
They won’t fix everything overnight, but they will lay the groundwork for earlier diagnosis, better access to trials, and ultimately, improved outcomes.
Just before summer Recess, the Bill moved from the Commons to the House of Lords. Steering it through the Commons in partnership with charities and campaigners, in my first year as an MP, was both a challenging and humbling experience. PMBs rarely make it through the Commons, as governments tend to keep a fairly tight grip on legislation, but, happily, this Bill has received strong support, not only from my colleagues in the Labour Party, but right across the House.
I am extremely thankful that it has made it this far, but the legislative process is far from over. When the Lords returns in September, the Rare Cancers Bill will be subject to further, even more detailed scrutiny, from a host of expert Peers, many with a background in healthcare themselves.
Significant amendments, at this stage, could easily end its progress towards Royal Assent, so we are very much still in campaign mode, making sure that the arguments under-pinning this legislation continue to echo in politician’s ears. Previously, I made a direct appeal to my fellow MPs, to join us in supporting the Bill through the various Readings and Committee stages.
Now I would like to extend a similar offer to Peers: please help Baroness Elliott – our sponsor in the Lords – to get this legislation over the line. It’s not a partisan issue - it’s a matter of principle, and of potential.
At every stage in the Commons, the outreach I received from patients and families who truly believe this could transform the lived reality for the rare cancers' community, was overwhelming. It has been an incredible honour to meet and hear from so many of them – they are one of the most hopeful and driven communities I have met, and I’ve been truly humbled by their ability to mobilise at a moments notice, when we’ve needed them.
The Bill should hopefully begin its second reading in the Lords in the autumn, and I know many cancer sufferers, survivors and loved ones will be keenly watching its progress. The odds have always been stacked against rare cancer patients, but if we can pass this legislation now, it will help shift attention and resources back onto these brave individuals and their families.
Scott Arthur is the Labour MP for Edinburgh South West and sponsor of the Rare Cancers Bill in the House of Commons.
