Myeloma, a type of blood cancer originating from plasma cells, presents a significant health challenge, especially in Black communities. It accounts for 2% of all new cancer diagnoses annually, primarily affecting older adults. According to Myeloma UK, while the risk remains small, myeloma is two to three times more common among Black individuals compared to White populations.

However, the statistics only tell part of the story. Health inequalities significantly shape how Black people experience diagnosis, treatment, and care for conditions like myeloma. A study by Clearview revealed that 60% of Black people in the UK believe their health is not equally protected compared to their White counterparts.

Combining Expertise: A Partnership for Blood Cancer Awareness

In recognition of Blood Cancer Awareness Month, we are proud to announce our new partnership with Myeloma UK, aimed at improving understanding and outcomes for Black communities affected by this disease. Myeloma UK is the only organisation in the UK solely dedicated to this cancer, while the Race Equality Foundation team has a strong track record of using evidence to combat racial inequality in healthcare. We are uniquely positioned to change the reality for Black communities impacted by Myeloma.

Understanding the Experience: Phase One

Our joint project will unfold over the next year, starting with gathering critical insights into the diagnosis, treatment, and care of Black individuals affected by Myeloma. These insights will be used to develop resources and materials to raise awareness of this disease within Britain’s Black communities.

Phase One of the project will focus on gathering these insights through a series of focus groups in Birmingham, London, and Manchester, where we will collaborate with local hospitals and clinicians. Each focus group will involve 6–10 participants, and they will take place in person, offering a space for individuals to share their lived experiences. In addition, we plan to include an online focus group for carers and support networks, ensuring we capture a wide range of perspectives.

Our focus groups will address:

  • Current pathways to Myeloma diagnosis
  • Specific barriers faced by Black patients in accessing care
  • The most effective ways to improve awareness and communication about the disease within Black communities

The insights gathered will form the basis of a detailed report, offering recommendations for future work. The report will summarise demographic data, key findings on diagnosis and treatment, barriers to healthcare access, common misconceptions, potential motivators for seeking medical help, and preferred communication methods for awareness-raising campaigns.

Awareness Campaigns: Phase Two

Once we have analysed the data and insights from the focus groups, we will move to Phase Two: creating culturally sensitive, community-driven awareness campaigns. We are committed to ensuring that the materials developed will resonate with Black communities and help address the unique challenges they face in accessing timely care for Myeloma.

The types of awareness materials will be guided by feedback from participants, and may include:

  • Social media and digital content such as informative videos and social media posts
  • Physical materials like brochures, posters, and leaflets
  • Community engagement events to garner discussion and knowledge-sharing within Black communities

Leaving no one behind

This partnership calls for urgent action to address the health inequalities in Myeloma care and treatment. The disparity in diagnosis times and the lack of adequate information for Black communities are unacceptable. We believe this initiative will not only improve awareness but also lead to earlier diagnoses, better treatment outcomes, and ultimately, a reduction in the number of lives affected by this devastating disease.

Dr Jahan Foster Zabit notes:

“We’re excited to partner with Myeloma UK on this important project addressing the disparities that people from Black African and Black Caribbean backgrounds face in relation to myeloma. Black people are at higher risk of developing this blood cancer, yet their experiences with diagnosis, treatment, and care are often overlooked. Through this partnership, we aim to better understand these challenges so we can raise awareness and support early detection within Britain’s Black communities.”