Black people in the UK are two to three times more likely to develop myeloma, a type of blood cancer, than White people. Despite an increased risk, awareness of the disease remains low, and structural barriers in healthcare, such as, unequal access to information, delayed diagnosis, and experiences of bias or discrimination, can make it harder for Black people to receive timely and effective care.
To help change this, the Race Equality Foundation and Myeloma UK launched the Knowledge is Power campaign during Blood Cancer Awareness Month in September. This collaboration combines Myeloma UK’s expertise in supporting people affected by myeloma with the Race Equality Foundation’s evidence-based work on addressing racial inequalities in health and care.
At the heart of Knowledge is Power is co-production with Black African and Black Caribbean communities across the UK. The campaign has been shaped directly by community voices and lived experiences, ensuring that the messages, language, and resources reflect real challenges, priorities, and strengths.
Read on to explore how community insights guided our campaign, from research and co-production, to the next steps in raising awareness and improving equity in myeloma care.
Understanding how myeloma affects Black communities
The first phase of our project set out to understand the experiences of Black African and Black Caribbean people diagnosed with myeloma across the UK. Through interviews and focus groups in Birmingham, London and Manchester, participants shared stories of diagnosis, treatment and navigating the healthcare system. These conversations revealed not just individual experiences, but a wider picture of inequality and resilience.
Key themes emerged around delayed diagnosis, trust and communication, and the emotional impact of living with myeloma. Many participants described how symptoms such as fatigue, bone pain or backache were often misattributed to ageing, menopause or stress, leading to long and difficult routes to diagnosis. Others spoke about limited involvement in treatment decisions once diagnosed and the lasting effects of mistrust and bias within healthcare.
Despite these challenges, participants also highlighted the strength found in family, faith and community support, which helped them stay hopeful and adaptable. These insights became the foundation for the design phase of the project, shaping messages that speak directly to lived experience and inspire greater understanding within Black communities and among health professionals.
From research to co-production
Building on the findings from phase one, our co-production group played a central role in turning research findings into meaningful messages. The co-production group was made up of people with lived experience of myeloma alongside health professionals and community members.
During the focus group discussions, participants identified video storytelling as one of the most engaging and trusted ways to connect with Black audiences. In response, we developed a video series featuring five Black individuals who shared their personal journeys with myeloma, including the youngest, diagnosed at just 35 years old. Together, the group co-designed the campaign’s key messages, tone and creative direction to ensure that the final materials were culturally relevant. Their stories bring visibility to experiences often overlooked and encourage others to recognise symptoms early and seek help.
Alongside the videos, posters were created showing Black people in everyday spaces such as churches, parks and homes. These visuals reflect familiar settings and help ensure that information feels accessible, authentic and representative of the communities we serve.
Watch the full short film here.
Access the posters to be used in clinical and community settings here.
Watch our short social media video series via our social media pages: Race Equality Foundation or Myeloma UK.
A celebration of collaboration
Before the campaign officially launched, we co-hosted a private online event to recognise and celebrate everyone who contributed to the project. Participants from the video series, along with members of the co-production group and focus groups, were invited to an exclusive first preview of the campaign films and posters. It was an opportunity to reconnect, share reflections, and celebrate what we had created together.
The event also featured messages of thanks and appreciation from Jabeer Butt, Chief Executive of the Race Equality Foundation and Sophie Castell, Chief Executive of Myeloma UK, who reaffirmed a shared commitment to advancing equity in myeloma awareness and care.
Why better outcomes for some, means better care for all
By centering the needs of those who are disproportionately affected, the campaign reinforces a crucial principle in health equity: improving outcomes for marginalised groups strengthens care for everyone. When earlier diagnosis pathways are created, communication improves, and trust is rebuilt with Black communities, the learning and progress benefit the wider myeloma population too. Addressing inequalities helps ensure that no one is left behind, creating a fairer and more responsive healthcare system overall.
What next?
Dr Jahan Foster Zabit, who leads the research project, shares what comes next:
“The success of the Knowledge is Power campaign has shown the strength of community-led research and storytelling in driving awareness and change. Our research shone a light on the structural inequalities and racism that shape the myeloma journey for too many Black African and Black Caribbean communities, from delayed diagnoses to unequal access to care. Phase 2 builds on that foundation – training Community Connectors to ‘pass it on’ through trusted local networks. By equipping communities to share knowledge and challenge inequity, we’re turning research into action and ensuring progress that lasts.”
Learn more
Watch the ‘Knowledge is Power’ short film and explore resources on recognising myeloma symptoms and key information on myeloma.
Further Resources:
Myeloma Symptom Tracker To help people describe their symptoms clearly, Myeloma UK has created a Symptom Translator, bridging the gap between everyday language and medical terms.
Further reading:
Lived experience matters: tackling myeloma awareness in Black communities – Read our Q&A our co-production members, Dunsi Bolarinwa on why lived experience is key to shaping more inclusive healthcare.
