During my clinical career I was frequently moved by the courage and determination of my patients and their families. In an often brutally unfair world, patients – people – constantly have to access those qualities to advocate for themselves and their loved ones, too often fighting for services and treatments they should automatically receive.
But then there are those people who don’t just take on the fight for themselves. They go further; seeing that others can’t take on a fight or don’t have a voice, they seek to change whole systems so that everyone gets what they need. We’ve all met those exceptional people along the way and marvelled as they raise awareness and drive change. They are natural leaders, bringing people together around a mission to achieve something truly impactful, usually at scale.
Scott Arthur MP is one such person. Losing his father-in-law to a glioblastoma in 2018, just 6 months after his diagnosis, Scott experienced that all too familiar story of loss and terrible confusion around why there were so few treatment options and so little progress to improve cure rates in this dreadful disease. Seeing the chance to act and a new MP, Scott has proposed a Rare Cancers Private Members Bill (PMB), with the specific purpose of incentivising research and investment in finding new, effective treatments for rare cancers.
The push for a rare cancers bill
There are those people who don’t just take on the fight for themselves. They go further; seeing that others can’t take on a fight or don’t have a voice
Getting a PMB over the line takes hard work. Undaunted, Scott and his team have sought opinion and built their knowledge about the barriers to rare cancer research. Truly listening to experts in the space they’ve used their learning to create a compelling case – a mission – which is (rightly) gathering key support as his PMB approaches its second reading in March.
Leadership, vision, grit, determination. It’s all there.
Participating in something like this – being on the inside of a process that is normally inaccessible – is new to me. But also getting to see someone else take on such a huge challenge without flinching is inspiring. It’s everything a charity CEO hopes for.
Scott and his team are taking the oft repeated message of longstanding and woefully inadequate rare cancer research funding and translated it into action through our legislative process. They have heard our call, understood its meaning and worked to draft a PMB with a real chance of achieving impactful change.
Building the PMB
How do MPs build an effective PMB? Not surprisingly, there’s a lot of discussion. Plenty of ideas can’t or don’t go in. There’s a need to ‘pick your battle’, including only the elements that have the best chance of achieving the overall purpose. For us that’s to rocket-boost rare cancer research investment so that we see more research trials and thus a greater chance of finding cures.
The beauty of a PMB is that it can combine several calls to action in a way that releases the sort of funding we need to see long term.
Firstly, to move governments from top line promises to actual spend, identify a point person with the mandate and the power to deliver. Someone tasked to make things happen so that so that rare cancer research spend increases meaningfully. Someone who can be held accountable.
At the same time, create a mechanism which allows patients and clinicians to ‘have eyes’ on all research trials relevant to their disease. That opens the door to better recruitment and research participation. No more closed networks, word of mouth referrals and too-late discoveries. Instead, create an up-to-date registry, with a specific focus on rare cancers, increasing visibility and enabling patients, clinicians and researchers to connect. Finding ways to get more patients onto trials in the rare cancer setting is a powerful way to improve statistical significance of the results which follow, speeding up progress towards better treatments.
Lastly, encourage pharmaceutical and biotech companies to prioritise early stage and translational research in the rare cancer setting – an area beset by low drug development success rates, high investment costs and bureaucracy which limits the chance of profitability. One route through would be to review our approach to orphan drugs, simplifying our systems to actively incentivise and support commercial partners to get interested in rare cancer research, invest in development and ultimately bring new treatments to market.
A bill of hope
Scott and his team have captured these needs and articulated them into a Private Members Bill. If enacted, it is a bill designed to tackle some of the toughest challenges that those impacted by rare cancers and brain tumours face. It is a framework for tangible, impactful change. A legacy of which Scott can be proud. And the product of true leadership. The Brain Tumour Charity can’t wait to fully support its passage.