If you have multiple myeloma, your chances of surviving it are better than ever. But people of different races, genders, socioeconomic levels, and ages often don’t get equal care. This causes some people to do better than others.
Most research on how this affects people with multiple myeloma – a type of blood cancer – compares its diagnosis, treatment, and death rates in Black and white populations. There are big differences. Researchers suspect those are mostly due to socioeconomic barriers that keep Black people and others from getting early, appropriate, and high quality care. Studies show that Black patients are:
- Less likely to be diagnosed early in the course of the disease
- Less likely to receive timely treatment due to delayed diagnosis
- Less likely to receive the same treatments as whites
- More likely to die from the disease
A Closer Look
Overall, the 5-year survival rate for all races with multiple myeloma is higher than it’s ever been. But the death rate is still higher for Black patients than for white patients who have the disease.
Access to care and new treatments is often not equal, which can affect how some groups of people with myeloma do long term. These disparities come from a variety of factors including:
- Your race and ethnicity
- Your age
- Your biological sex at birth
- Whether you live in a city or a more rural place
- The country you live in
- Your socioeconomic status
- Your health insurance
Researchers are trying to better understand these disparities. By understanding where they come from, there may be ways to narrow the gaps and improve outcomes for everyone.
It Doesn’t Affect Everyone the Same
Multiple myeloma is different for Black people in some ways, including:
- They’re more likely to get it.
- They tend to get it at younger ages.
- The pre-myeloma condition, monoclonal gammopathy of undetermined significance (MGUS), is twice as common in Black people as it is in white people.
- They only make up 6% of those in myeloma clinical trials.
- They may not be offered the newest treatment options.
Some studies suggest the actual biology of myeloma may be different in Black people. Researchers are looking into that to understand it better.
In a large study of over 15,000 people with multiple myeloma, researchers found that Black people fared better than whites when the quality of their treatment was the same. This suggests the differences in their outcomes are due to socioeconomic factors.
Fortunately, recent research shows that care for Black and white patients with myeloma is becoming more equitable. It also found Black people who got stem cell transplants lived longer. But another study that looked at this found they were less likely to have those transplants. It also found they’re less likely to get a newer drug called bortezomib. Along with not having equal access to these treatments, other reasons may be problems inside the health care system itself, the cost of new drugs, or differences in how white and Black people make decisions. More research is needed to understand this better.
Underrepresented in Clinical Trials
Black people tend to not take part in clinical trials and other research studying multiple myeloma and its treatments, while white people make up the majority. All reasons for this aren’t understood, but some include:
Mistrust. Studies show many Black people don’t trust the health care system. That’s rooted in a long history of being targeted and exploited by medical researchers. A study found some Black people believe they’ll be exposed to more risks than others in clinical trials. Fortunately, some recent studies show an increasing willingness in the Black community to participate in research.
Lower income. Black people and other racial minorities are more likely to be in lower-income groups. And those with lower income may not be able to afford transportation to research centers. They also may have hourly paying jobs that don’t allow time off work for being in studies.
Racial bias. Some researchers and health care providers have racial bias, and that can get in the way of enrolling Black patients in clinical trials. Studies show there are experts who don’t think they’d adhere to research guidelines. So they may not tell them about opportunities to be in some studies.
Health care literacy. Black people and other racial minorities may have less access to information about medical conditions or research opportunities. This can limit their awareness and understanding of the importance of research.
Less Is Known About Other Groups With Myeloma
There’s less data about other racial and ethnic groups. More research is needed into how myeloma affects Hispanic, Asian, and Native American people.
A few studies have looked at disparities in people with myeloma who are Hispanic. One found that the Hispanic patients received stem cell transplants at a younger age, but their myeloma was more advanced. It also found that while there’s an increasing number of people with myeloma getting stem cell transplants, that increase is less in Hispanic patients.
Researchers think it’s important to figure out why certain treatments such as transplants happen less in certain groups than others. Your race and ethnicity doesn’t seem to affect how well you’ll do with them.
These outcome differences haven’t been studied as much. Some research found no difference in how men and women fare with multiple myeloma. But another study found that women with multiple myeloma are less likely to die from it than men are.
Women also got stem cell transplants sooner after diagnosis than men. It’s not clear why this happened, but researchers suggest it could be related to differences between men and women including:
- Attitudes about health
- Healthy behaviors
- What they do after treatment to stay healthy
- Other health conditions
It’s also possible that there are differences in the myeloma itself. Differences in the immune system between men and women may also play a role.
Talk to Your Doctor
If you have multiple myeloma, the key to having your best outcome is to follow your doctor’s recommendations. You might ask them about opportunities to take part in clinical trials. If you need help with transportation or affording treatment and meds, ask them if there are resources available. You can also find myeloma organizations online offering support groups, financial assistance, and educational programs.