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So why the difference in outcomes?
“The major reason is health care inequity related to the treatment of multiple myeloma affecting Black patients,” says Srinivas Devarakonda, MD, a hematological oncologist who specializes in plasma cell disorders at the Ohio State University Comprehensive Cancer Center.
Disparities in Multiple Myeloma Diagnosis and Treatment
As with any cancer, early detection (and treatment) increase your odds of survival in myeloma. Black patients tend to be diagnosed with this cancer at a later, more advanced stage. And they often lack access to the latest and best treatments.
When someone has “relapsed refractory myeloma,” meaning that it comes back despite treatment, access to cutting-edge care is critical, says Monique Hartley-Brown, MD, a hematologic oncologist at the Dana-Farber Jerome Lipper Multiple Myeloma Center. (“Relapsed” refers to the cancer coming back; “refractory” means it didn’t respond to a treatment.)
“Relapsed refractory myeloma basically is late-stage myeloma, and that’s where the newer treatments come in,” Hartley-Brown says.
In these cases, the gold standard is “triple therapy,” in which three drugs are used at the same time.
“If you’re going to a local oncologist (rather than a major cancer center) you might only be getting two, when you should be getting three,” she says.
If you’ve tried at least four treatments and have relapsed or your cancer hasn’t responded to them, you should be eligible for CAR T-cell therapy. This treatment involves genetically modifying your own immune cells and using them to fight the cancer.
Or you might be a candidate for a stem cell transplant. In this procedure, doctors harvest stem cells from your own body or from a donor. After you have chemotherapy to kill off cancer cells, your doctor then infuses the cells back into your body.
Black people with myeloma are less likely to be offered triple therapy, CAR-T therapy, or a stem cell transplant.
There’s also a difference in when Black people tend to be offered the monoclonal antibody drug daratumumab, which is given after at least three other treatments fail. Research shows that those who are eligible for daratumumab wait an average of 43 months after their diagnosis to start it. That’s about 9 months longer than it takes for white people with similar cases of myeloma to start this therapy.
“We have amazing advances, but the number of African Americans who are benefitting from them is lower,” says Irene Ghobrial, MD, director of the Clinical Investigator Research Program for multiple myeloma at Dana-Farber.
Bias from health care providers, being under- or uninsured, lack of money to travel to major cancer centers, and low health literacy are all barriers to treatment in minorities, says Devarakonda.
“Social and cultural beliefs, patient-provider racial discordance, and poor social support may contribute to the racial disparities in myeloma care” as well, he says.
Also, only 8% of participants in clinical trials for myeloma are Black. These trials of new treatments offer the best hope for some people with relapsed refractory myeloma who’ve exhausted other options.
This lack of representation in research also means Black people are less likely to know about the effectiveness of new therapies if the FDA eventually approves them.
The issue isn’t lack of interest. Black patients simply aren’t told about clinical trials and asked to be in them as often, says Hartley-Brown.
How Is the Medical Community Addressing Race Disparities?
Recent research has shown that when myeloma patients are treated equally, Black people fare just as well — it not better — than white people. So how to ensure that everyone receives equally good care?
Change isn’t fast or easy, but there’s evidence that progress is in the works.
“There has been increased awareness of the health care disparities in cancer care, including in multiple myeloma, and the need to address them in the last few years,” says Devarakonda.
Several scientific organizations have added diversity and equity to their list of priorities, he says. Drug companies are also starting to require that more minority patients be included in clinical trials.
Increasing awareness about myeloma among minorities is also key. This helps people who are at high risk or have abnormal bloodwork advocate for themselves. That might mean simply asking their doctor to check out why they’re anemic or their kidney function isn’t normal, says Hartley-Brown.
She adds, though, that the responsibility can’t rest only on patients.
“This is a systemic issue in the medical system as well as a societal issue,” she says.
In addition to education and awareness, Ghobrial believes that routine screenings for people who are at high-risk for myeloma will have a big impact on survival rates. She’s leading research that aims to determine whether such a program, together with treatment of so-called “precursor” conditions, will translate to saving more lives.
Myeloma is usually diagnosed only when it’s already developed into full-blown cancer. But many people first get a precursor condition called monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma.
It’s not unusual to have MGUS and not know it. Right now, doctors follow a “watch and wait” strategy even for those who do find out that they have it. This calls for frequent checkups, but no actual treatment until the disease progresses.
“We’re all trained to wait to treat myeloma until there’s end-stage organ damage, but we have to challenge that,” says Ghobrial. “It’s like waiting to treat early-stage breast cancer until someone has metastases,” which is when the cancer has spread.
The PROMISE study, which is focused on early screening, is open to African Americans age 30 and older, as well as people of any race who have a first-degree relative (such as a parent or sibling) with blood cancer.