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Our groundbreaking Precursor Framework report, published today, is a milestone step in outlining the unmet need and associated recommendations required to drive change in myeloma precursor conditions (MGUS and smouldering myeloma).
The Framework outlines what is needed to transform research, services and support, and ultimately lead the way to prevention and cure in myeloma.
Sarah Galley, our Senior Innovation and Implementation Officer explains more about our Precursor Framework below.
“It’s an invisible presence that you can’t escape… it’s particularly difficult when you’re going for your check-up. You fear what those results might be. Is this when your life will change dramatically? If you have untoward changes in your bodily function, you think oh gosh is this the start of it? You know, how will my life change? How will I cope with that? How will my family cope with that?”
– Quote from a person living with a precursor condition
What is the Myeloma UK Precursor Programme?
Like those of you working with patients living with precursor conditions, at Myeloma UK we know that more needs to be done to make sure everyone gets the care and support they need. Our Myeloma UK Precursor Programme is how we are driving the changes needed, with the publication of this Precursor Framework as the first step.
The Programme covers all the work that we are doing on precursor conditions and is built on evidence and insight generated through our research programmes, evidence that informed our research strategy, as well as information gathered via our support services (such as our Myeloma Infoline) and opinion from world leading clinicians and researchers.
The Programme explores key themes including:
What it means to live with a precursor condition.
Supporting diagnosis and detection.
Optimal management of precursor conditions.
A Framework driven by you
The first step in the development of the Framework began with the insights gathered at our international precursor roundtables. We brought together clinicians and researchers like you – from the UK and beyond, people living with precursor conditions and key UK decision makers to discuss the critical challenges faced by people living with precursor conditions.
The following areas highlight some of the recommendations in which your experience is key to driving the direction of change for precursor conditions:
Precursor screening
Our recommendation: To assess current evidence to determine the feasibility and benefits of a screening programme precursor conditions (MGUS and smouldering myeloma), now or in the future.
Shaping this together: We know that precursor screening is a hot topic in the myeloma clinical and research world right now. We are committed to understanding the role of screening for earlier detection in UK clinical practice, but we need your clinical consensus to make sure our next steps drive opportunity in the right way.
Trial design and access
Our recommendation: To optimise clinical trial design and access, establishing priorities that will lead to trials that could change clinical practice for precursor conditions.
Shaping this together: As the researchers and healthcare professionals working across trials, you have the insight to identify priorities for maximum impact in the clinic, and for people affected by precursor conditions.
MGUS monitoring and management
Our recommendation: Development and implementation of a national model to manage and monitor monoclonal gammopathy of undetermined significance (MGUS), tailored to the needs of different parts of the UK.
Shaping this together: There is a need for a unified approach to monitoring and management of MGUS across the UK, to ensure equality and access to care for patients. But we need you – the HCPs who understand both the realities of frontline care and the systems that shape it – to guide what this looks like and form a consensus on which we can act.
Commenting on the launch of the Framework, Professor Graham Jackson, our Chief Clinical and Scientific Advisor said:
We have the opportunity to ‘move the dial’ in the prevention space in myeloma by exploring key fundamental questions in precursor conditions. We also know that more is needed to support those living with precursors today… the recommendations outlined in the report are a starting point for all of us to drive those much-needed conversations and actions forward.
Professor Graham Jackson, Myeloma UK’s Chief Clinical and Scientific Advisor
Our other recommendations at a glance
All our recommendations work together to create a framework addressing the issue of myeloma precursor healthcare in the UK. Alongside those discussed above, to drive meaningful change for those living with precursor conditions we need:
Greater investment in and support for research that will unlock the biology of precursor conditions and enable ways to identify who is mostly likely to progress to active myeloma.
Generation and publication of accurate data on people living with precursor conditions, in order to improve monitoring, care, support and to explore treatment options in precursor conditions.
Implementation of best practice for monoclonal gammopathy of renal significance (MGRS) management and follow recommendations of the UK Kidney Association (UKKA) Rare Disease Group for MGRS.
Greater investment in laboratory diagnostic services, to ensure resource and capacity to deliver appropriate diagnostics and testing infrastructure to meet demand now and in the future.
Equity of access to a holistic support model for people affected by precursor conditions, including their carers and their families that better meets their needs, including underserved groups, across age and life stages.
A guarantee that patient insight underpins all recommendations outlined within this Framework across diagnosis, treatment and care.
Commenting on the Framework, Dr Sophie Castell, CEO at Myeloma UK said:
For the first time, our strategy focuses on preventing myeloma and this Framework marks the beginning of our Precursor Programme of activity which underpins this strategic priority. We will be at the forefront of delivering change, however we will need partnerships and collaboration to see our ambitions and recommendations come to fruition…for the benefit of people now and to create meaningful impact for the future.
Dr Sophie Castell, CEO at Myeloma UK
Why is Myeloma UK doing this work?
An “invisible presence” is what living with a precursor condition can feel like. Not knowing when or if that condition is going to become active myeloma, the fear of the unknown. Every single person who has myeloma has had a precursor condition; monoclonal gammopathy of undetermined significance (MGUS) and smouldering myeloma.
This is about the people living with one of these conditions – their care, their future. It’s about you, the healthcare professionals and researchers who already recognise that more needs to be done – to make sure that patients get the right support, that their condition is monitored and managed consistently, guided by established consensus on best practice.
But right now, our community lacks a clear, unified direction on how to get there. We know the ambition is shared, but the pathway is fragmented. To meet the needs of people living with precursor conditions, we need more: new policy, clinical consensus and new tools, research infrastructure and system-wide support.
Our organisational strategy and our research strategy positions Myeloma UK as a catalyst for change and now our Precursor Programme is helping us deliver on this ambition in the precursor space. This Framework is the programme’s first output – with this we can drive the direction of change.
We are witnessing a shift in wider health policy, from classic symptom awareness and prevention campaigns to a new, smarter model built on innovation and interception. At the same time, research momentum is building internationally and the clinical community is increasingly focused on answering fundamental questions in precursor conditions. Crucially, the lived experience – including the physical and psychological burden – of people living with precursor conditions is being explored.
Commenting on the launch of the Framework, Shelagh McKinlay, Director of Research and Advocacy said:
In the last decade we have made huge progress in treatment for myeloma, however we need to see the same transformational change delivered for people living with precursor conditions. We need further research into precursor conditions, which could help us to unlock a cure, and set out a path to prevention.
Shelagh McKinlay, Director of Research and Advocacy at Myeloma UK
What next?
As the only UK charity focused on myeloma and its associated conditions, we’re uniquely placed to support the recommendations in this Framework by advocating for improvements and innovations to be developed and implemented, convening expertise, and championing the delivery of change across policy, research and care.
However, we know the recommendations outlined in the Framework will only be achieved through a combination of connection, partnerships and collaboration from a broad spectrum of stakeholders and decision makers – including you, the healthcare professionals and researchers working directly with people living with precursor conditions.
Right now, alongside people affected and decision makers in the NHS, Government and industry, you can help refine the consensus statements needed for us to take action together.
The time for change is now, and together we can ensure transformational change for people living with precursors and map a route to prevention.
