PROJECT

Addressing myeloma health inequalities

Myeloma is a blood cancer that is two to three times more common in Black people.

Despite this increased risk, awareness and understanding of myeloma remain low in Black communities.

To help change this, Myeloma UK has partnered with the Race Equality Foundation to explore the experiences of Black African and Black Caribbean people living with myeloma. Together, we are conducting research and co-producing culturally sensitive resources that raise awareness, improve understanding, and shape fairer healthcare policy and practice.

In September, during Blood Cancer Awareness Month, we launched the ‘Knowledge is Power’ campaign,  featuring powerful personal stories from Black voices diagnosed with myeloma.

This marks the second phase of our ongoing commitment to advancing health equity, improving myeloma care for Black communities so that care improves for all.

Knowledge is power

Personal Stories from the Black myeloma community

In our video series, five people living with myeloma share their personal journeys,  from the first signs of illness to life after diagnosis. Their stories highlight the impact of myeloma, the importance of recognising symptoms early, and how the right support can help people live well.

Our goal is to help people better understand their risk of myeloma, recognise the symptoms, and feel confident to speak up and advocate for themselves. By spreading knowledge within our communities, we can help improve diagnosis times and, ultimately, outcomes for everyone affected by myeloma.

Disparities in myeloma diagnosis and care

Myeloma disproportionately affects people from Black communities in the UK. Black patients also face barriers in diagnosis and access to treatment affecting care:

  • Black patients experience longer delays from first symptoms to diagnosis – an average of 127 days compared to 93 days for White patients.

  • Black patients are underrepresented in clinical trials in the UK, reducing access to potentially life-saving treatments.

Co-designing myeloma awareness with lived experience

To address these disparities, the project explored the experiences of diagnosis, treatment, and care among people from Black African and Black Caribbean backgrounds,  with co-production and lived experience at the heart of the process. This work involved:

Phase One: A literature review to map existing evidence and identify knowledge gaps.

Phase One: We held focus groups in Birmingham, London, and Manchester in collaboration with local hospitals and clinicians. Each in-person group (6–10 participants) provided space to share lived experiences, alongside an online session for carers and support networks to capture a wider range of perspectives.

Phase Two: Engagement with our co-production group made up of people with lived and professional experience, to create awareness-raising materials.