From ASH to action: tackling health inequalities, together

Pippa Foster, our Director of Lived Experience & Clinical Practice, discusses one of the most marked inequalities in myeloma, the steps we have taken towards change and our plans for a stronger future where everybody is supported.  

Health inequalities remains a hot topic across healthcare, research, policy and of course for those living the experience. Myeloma is no exception and in December, ASH2023, the world’s largest haematology conference, placed it in international focus as a leading theme on their global stage. Experts highlighted the need for better understanding about why some people are more likely to be affected by myeloma than others and called for improved access to clinical trials and treatments. 

Myeloma and inequalities…let’s begin a conversation.

People living with less common cancers experience inequalities and myeloma is no exception. Research has shown that people from minority backgrounds are particularly at risk of experiencing inequality and with myeloma, it is Black people likely to be most impacted.

So, what do we already know?

In the UK, around 5,900 people are diagnosed with myeloma each year. Black people are 2–3 times more likely to be affected than white people. This is a concerning disparity, further highlighted by research showing that Black people also tend to be diagnosed with myeloma at a younger age than people from other ethnic groups.

While the exact reasons behind this are still not clear, ongoing research suggests that certain genetic abnormalities associated with the development of MGUS (a precursor condition that can lead to myeloma) and/or myeloma, are more common amongst Black people than white people. Read our Ask the Nurse blog for supportive information about the impact of myeloma on Black communities.

Inequality in healthcare

Black people with myeloma are also more likely to experience longer times from first symptoms to a diagnosis compared to white people. Our 2022 Myeloma UK A Life Worth Living report revealed the greater impact on quality of life that these delays have for patients and carers from ethnic minority groups compared to white patients. We know that early diagnosis is crucial for all patients to limit life-changing complications and access timely treatment.

Black patients are also underrepresented in clinical trials in the UK, despite trials offering much-needed treatment opportunities for patients who have few approved options remaining on the NHS. At ASH in December, research showed that Black people in the USA were more likely to be found ineligible for trials, sometimes because of normal racial differences of things like blood cell levels. Work has begun towards more inclusive trial designs, improving access and providing more treatment options for more people, for longer.

Work by Sanofi, a pharmaceutical company involved in developing new myeloma treatments, has also shown that different communities have different awareness of myeloma, which can affect how likely people are to reach out to their GP when experiencing symptoms, and treatment decisions.

At Myeloma UK we are committed to addressing health inequalities and supporting people to live well but we know that we cannot do this alone; we need to work together – with healthcare professionals, with researchers, with industry specialists but most of all, with the people and communities most affected.

This is a big but exciting challenge – one we’re committed to. That is why we have made it a central to our new strategy.

New strategy, stronger focus

Over the last few years, we have made some progress in starting to address health inequalities, but it’s not enough. We recognise there is so much more to do, learn and explore.

Myeloma UK have just launched a new strategy. As this unfolds, we are committing to evolving our ways of working to make sure Myeloma UK is inclusive for underrepresented communities affected by myeloma, and that we work towards health equality.

Here are just some of the ways we plan to do this:

  • We will improve the diversity of our Patient Panels – this means better representation of patients from different backgrounds, and more diversity in the voices that guide our priorities and our work 
  • We will involve people with lived experience directly in more of our work, focusing on coproduction methods to ensure our actions are truly shaped by those affected by myeloma 
  • Using our more diverse patient panels and lived experience partners, we will be able to make better and more targeted support offers and services for those who need them 
  • We will work with other organisations, committees and networks to learn, develop and grow in this space 

Continuing the conversation together

Being inclusive means finding new and different ways to work with and alongside you, our incredible community. We need your voice. So, we’ll be reaching out more and asking new questions, insights and opinions so that we evolve with your guidance, ensuring what we offer resonates and empowers our whole community.

Together we are stronger. Together we achieve more.

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