Knowledge is Power – Tackling health inequalities 

We know that when it comes to myeloma, inequalities exist. Black people are two to three times more likely to develop myeloma than white people and are often diagnosed at a younger age. We also know that Black communities face barriers including delayed diagnosis, underrepresentation in clinical trials, limited culturally relevant information and ultimately poorer outcomes.  

It’s not good enough.  

Everyone with myeloma deserves the same opportunity for a timely diagnosis, access to the best treatments and information that supports their needs. We can only achieve this if we recognise that inequalities exist and take action to tackle them.  

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

Developed over two years in collaboration with Black people who have lived experience of myeloma and the Race Equality Foundation, this report is more than a piece of research. It is a rallying call to policy makers, healthcare providers, government, and all of us working in myeloma to come together to tackle the inequalities faced by Black communities. 

It lays out a list of recommendations focused on five core actions that need to take place to overcome these barriers and create fairer experiences 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. 

We know that lasting change also requires evidence. One issue that came up repeatedly throughout this project was the lack of high-quality and consistent ethnicity data. Without accurate data it is extremely hard 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 for system-wide action to improve the collection and quality of ethnicity data from diagnosis to treatment to support, every part of the cancer pathway. 

As the only UK charity focused on myeloma and its associated conditions, we have a responsibility to be part of that change. In our report you can read our commitments; some of which we have already begun to implement, from piloting our new volunteering role of community connectors to ensuring that our materials reflect the diversity of the myeloma community. Together we must challenge the inequalities that exist in myeloma so that everyone has an equal chance to live well.