Over the past twenty years, treatment options for multiple myeloma have increased dramatically. This has led to an increase in survival rates. Although there is still no cure for this blood cancer, more than 90% of those who have the disease respond to treatment. Many now live with the disease for ten years or more.
Despite these encouraging facts, your chances of successful treatment and survival vary widely based on:
- Your age
- Your overall health at the time of diagnosis
- The stage at which the cancer is diagnosed
- The type of treatment you receive
And race, ethnicity, and socioeconomic status can influence all of these things.
According to data from the National Cancer Institute, myeloma is about twice as common in black people as in white people. Black people are twice as likely to die from myeloma, although it is usually diagnosed at a younger age. (Less data is available on rates in other racial and ethnic groups.)
It is true that there are often genetic differences between the myeloma that occurs in black people and that in white people. But research suggests such variations can actually give black people an advantage.
So why this difference in outcomes?
“The main reason is the health care disparity associated with the treatment of multiple myeloma in black patients,” says Srinivas Devarakonda, MD, a hematologic oncologist who specializes in plasma cell disorders at The Ohio State University Comprehensive Cancer Center.
Differences in the diagnosis and treatment of multiple myeloma
As with any form of cancer, early detection (and treatment) increases your chances of survival with myeloma. Black patients are often diagnosed with cancer at a later, more advanced stage. And they often don’t have access to the latest and greatest treatments.
When someone has “relapsed refractory myeloma,” meaning it comes back despite treatment, access to advanced care is critical, says Monique Hartley-Brown, MD, hematologic oncologist at Dana-Farber Jerome Lipper Multiple Myeloma Center. (“Relapse” refers to the cancer coming back; “refractory” means the cancer did not respond to treatment.)
“Relapsed refractory myeloma is essentially late-stage myeloma, and that’s where the newer treatments come in,” says Hartley-Brown.
In these cases, the gold standard is ‘triple therapy’, where three drugs are used at the same time.
“If you go to a local oncologist (instead of a big cancer center), you might only get two when you should get three,” she says.
If you have tried at least four treatments and have relapsed or your cancer has not responded, you may be a candidate for CAR T cell therapy. This treatment involves genetically modifying your own immune cells and using them to fight the cancer.
Or perhaps you are eligible for a stem cell transplant. In this procedure, doctors collect stem cells from your own body or from a donor. After you have chemotherapy to kill 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 is also a difference in when black people tend to be offered the monoclonal antibody daratumumab, which is given after at least three other treatments have failed. Research shows that those eligible for daratumumab wait an average of 43 months after their diagnosis before starting it. That’s about 9 months longer than it takes for white people with similar cases of myeloma to start this therapy.
“We have made tremendous progress, but the number of African Americans benefiting from this is lower,” said Irene Ghobrial, MD, director of the Clinical Investigator Research Program for multiple myeloma at Dana-Farber.
Provider bias, being under or uninsured, lack of money to travel to major cancer centers and low health literacy are all barriers to treating minorities, Devarakonda says.
“Social and cultural beliefs, racial discord between patient and provider, and poor social support may also contribute to racial disparities in myeloma care,” he says.
Furthermore, only 8% of participants in myeloma clinical trials are black. These trials of new treatments offer the best hope for some people with relapsed refractory myeloma who have exhausted other options.
This lack of representation in research also means that Black people are less likely to know about the effectiveness of new therapies when the FDA ultimately approves them.
The problem is not a lack of interest. Black patients are simply not informed about clinical trials and are not asked to participate as often, Hartley-Brown says.
How does the medical community deal with racial disparities?
Recent research has shown that when myeloma patients are treated equally, black people do as well – and no better – than white people. How do you ensure that everyone receives equally good care?
Change is not quick or easy, but there are indications that progress is in the making.
“There has been increased awareness in recent years of health care disparities in cancer care, including multiple myeloma, and the need to address them,” says Devarakonda.
Several scientific organizations have added diversity and equality to their priority lists, he says. Drug companies are also beginning to demand that more minority patients be included in clinical trials.
Increasing awareness of myeloma among minorities is also critical. This helps people who are at high risk or have abnormal blood tests to advocate for themselves. That could mean simply asking their doctor to find out why they’re anemic or if their kidney function isn’t normal, Hartley-Brown says.
However, she adds that the responsibility cannot fall solely on patients.
“This is a systemic problem in the medical system, but also a societal problem,” she says.
In addition to education and awareness, Ghobrial believes that routine screenings for people at high risk for myeloma will have a major impact on survival rates. She is leading research that aims to determine whether such a program, along with treatment for so-called “precursor” conditions, will translate into saving more lives.
Myeloma is usually not diagnosed until it has already developed into a full-fledged cancer. But many people first develop a precursor disease called monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma.
It is not uncommon to have MGUS and not know it. Right now, doctors are following a “watch and wait” strategy, even for those who find out they have it. This requires frequent checkups but no actual treatment until the disease progresses.
“We are all trained to wait to treat myeloma until there is end-stage organ damage, but we need to challenge that,” says Ghobrial. “It’s like waiting to treat early-stage breast cancer until someone has metastasized,” and that’s when the cancer has spread.
The PROMISE study, which focuses on early screening, is open to African Americans ages 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.