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Ask the Nurse: Black people and myeloma

This Black History Month, we want to answer some of the questions we receive on the Infoline about the impact of myeloma on the Black community.

Myeloma is a blood cancer that arises from plasma cells. It accounts for around 2% of new cancer diagnoses each year and is often associated with older populations. Myeloma is a challenging diagnosis for every patient, and Black people are at greater risk of developing the cancer compared to other ethnic groups.

This Black History Month, we want to answer some of the questions we receive on the Infoline about the impact of myeloma on the Black community.

What is my risk of myeloma?

Every year, around 5,900 people are diagnosed with myeloma in the UK. While the risk remains relatively low, myeloma is 2–3 times more common in Black people than white people. Myeloma is also more likely to affect Black people at a younger age than people from other ethnic groups.

The reasons for this are not yet understood, but research is ongoing to try to understand possible causes. It is thought that it might be connected to genes.

Research has identified that there are certain genetic abnormalities linked to the development of MGUS (a precursor condition that can lead to myeloma) and/or myeloma, which are more common amongst Black people than white people.

Can I be tested for these genes?

There are several different tests that detect different types of genetic changes in cells. However, scientists are still working to understand how genetic abnormalities contribute to someone developing myeloma.

This means that, for now, people are not routinely tested for genetic abnormalities that could predict myeloma, including genetic abnormalities more common amongst Black people.

Some patients may have routine genetic tests following a diagnosis of myeloma.

This type of genetic testing looks for abnormalities that can help healthcare teams understand how the patient’s myeloma may respond to treatment. It is not specific to ethnic group, or how likely it is that a person will develop cancer.

Does my myeloma diagnosis mean my family is at higher risk?

People who have a close relative (for example, a parent, brother or sister) with myeloma do have a slightly higher risk of also developing myeloma. However, this risk is still very low.

Having myeloma doesn’t necessarily mean that a patient’s family members will develop the disease.

Inherited genetic factors can play a role, but other factors are needed before myeloma develops. Read more about this is in our Is myeloma an inherited cancer? Infosheet.

What treatments can I access?

Healthcare teams work with patients to identify the most suitable treatments. Treatments can depend on a number of factors, such as:

  • The patient’s age and general health
  • Whether the patient has had myeloma treatment before (and if so, which treatments)
  • The characteristics and activity of their myeloma
  • The extent to which the patient’s myeloma is causing complications
  • Whether or not the patient wants to take part in a clinical trial

Treatments are not chosen based on ethnic backgrounds.

Can I take part in clinical trials?

Clinical trials are voluntary research investigations that can allow access to new treatments which are not yet available on the NHS.

Clinical trials need to make sure they involve patients that fit specific criteria. This is called ‘eligibility’. The eligibility criteria often include things like age and type of myeloma. You can read more about this in our Ask the Nurse blog on clinical trials.

Clinical trials can provide patients with new options if they have previously had several treatments and have fewer approved options left available to them.

However, research has found that Black patients are underrepresented in clinical trials in the UK.

Researchers and doctors are starting to work towards better representation of the myeloma population within clinical trials. This will mean that:

  • More Black patients will get access to new, life-extending treatments sooner
  • The data that is used to decide which treatments should be approved for use in the NHS will better represent the whole myeloma community

Read more about this in our magazine, Myeloma Matters.

What can be done to improve healthcare for myeloma patients?

Researchers are continuing to work to understand what causes more myeloma cases among Black people. We hope this will lead to earlier diagnoses and better treatments.

Patient surveys and healthcare research has highlighted some concerning differences in patient experiences between different ethnic groups. Healthcare professionals and organisations like Myeloma UK are also working to identify, understand and reduce disparities in access to myeloma healthcare and improve patient-specific treatment access.

But patients are key to raising awareness. Hear from Dennis Smith on why he wants to raise awareness of myeloma in his community. Sharing your story can help us reach more people and make sure that everybody is represented.

Increasing awareness of myeloma in Black communities can improve the chance of timely diagnoses and access to the most appropriate treatments – reducing the chances of long-term complications, and helping people live longer and better with myeloma.

Myeloma is a challenging diagnosis for any patient and their loved ones, so raising awareness and getting timely diagnoses for all patients is vital. You can read more about myeloma in our Infopack for newly diagnosed myeloma patients, or find out about genetic abnormalities in myeloma in our Genetics and myeloma Infoguide.

Get in touch with us through the Myeloma Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) or by using the Ask the Nurse email service.

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