Knowledge is Power – Tackling health inequalities in Black communities

We know that when it comes to myeloma, inequalities exist.

That’s why today, we’re launching our report, Knowledge is Power.

Developed over two years in collaboration with Black people affected by myeloma and the Race Equality Foundation, this report is more than a piece of research. It is a rallying call to tackle the inequalities faced by Black communities.

Black people are two to three times more likely to develop myeloma than white people and are often diagnosed at a younger age. Black communities also continue to face barriers including delayed diagnosis, underrepresentation in clinical trials, limited culturally relevant information and poorer outcomes.

From understanding inequalities to driving change

The knowledge needed to tackle health inequalities must come from those who understand them best.

That’s why our report is based on the experiences of Black people living with myeloma, and their carers and family members. It sets out five core recommendations to create better care for Black people living with myeloma.

1. Improving early diagnosis.
2. Building trust through better communication.
3. Supporting families and communities.
4. Increasing awareness and representation.
5. Driving institutional and policy change.

These recommendations include targeted training for GPs and primary care staff to improve recognition of myeloma symptoms; embedding culturally competent communication across cancer services; strengthening support for families, carers and communities; increasing representation in awareness campaigns and educational materials; and expanding participation in clinical research and trials.

The power of lived experience

People affected by myeloma in the Black community have shared their experiences, which drive these recommendations. From their testimonies, four interconnected themes emerged:

Delayed diagnosis and systemic barriers

Participants described prolonged diagnostic journeys with symptoms being attributed to ageing, menopause, musculoskeletal problems or lifestyle factors before myeloma was considered. Some people reported experiencing significant deterioration in their health before receiving a diagnosis.

These findings reinforce the importance of considering myeloma early in any patient presenting with persistent symptoms – especially in groups known to be at higher risk.

Trust and communication

Participants described feeling dismissed, disbelieved or inadequately informed during interactions with healthcare professionals. Poor communication, reliance on medical jargon, and a lack of culturally sensitive dialogue left patients and carers feeling disempowered.

For healthcare professionals, this highlights the importance of culturally competent communication and accessible information tailored to the individual.

The role of support systems such as faith, family and community

It was also clear the important role played by families, faith groups and community networks, often helping individuals navigate complex healthcare pathways and compensating for the gaps in institutional care.

Recognising and engaging these support networks could help services improve access, understanding and patient experience.

The need for greater awareness, representation and advocacy

Most participants had never heard of myeloma before diagnosis and highlighted the importance of seeing themselves reflected in patient information materials, support groups and in clinical research.

Healthcare professionals can support improved awareness and representation by championing inclusive patient resources and support, and encouraging participation in research.

Closing the gap through better data

We know that lasting change also requires evidence. Throughout this work, the lack of available high-quality ethnicity data emerged as a consistent barrier. We need accurate data to understand why inequalities exist and, crucially, whether the efforts to tackle them are working. That’s why we conclude our report with a call to improve the collection and quality of ethnicity data from diagnosis to treatment and support services.

Knowledge is power. Together, we can drive change

As the only UK charity focused on myeloma, we have a responsibility to be part of that change. That’s why we’re already implementing some of the commitments outlined in our report.

We are using this evidence to shape our new clinical education strategy, piloting Community Connector volunteer roles, ensuring our resources reflect the diversity of the myeloma community and working to widen access to clinical trials through our MyeTRIAL Partnership.

But together, we can do more. We must challenge the inequalities that exist in myeloma so that everyone has an equal chance to live well.

We’re committed to working with the Black community, healthcare professionals, industry, the third sector and system leaders. Together, we can tackle inequalities in myeloma and help ensure that everyone affected has access to the knowledge, support and care they deserve.

If you would like to support our call for mandatory ethnicity data across the cancer pathway or discuss the issues raised in our report about health inequalities in myeloma, you can email us at hcp@myeloma.org.uk