How Racial Disparities Affect Results
Over the past 2 decades, treatment options for multiple myeloma have increased dramatically. This led to a slight increase in survival rates. Although there is still no cure for this blood cancer, more than 90% of those who have it respond to treatment. Many now live for 10 years or more with the disease.
Despite these encouraging facts, your chances of treatment success and survival vary greatly, depending on:
- Your age
- Your general state of 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 affect all of those things.
According to data from the National Cancer Institute, myeloma is about twice as common in blacks as in whites. Blacks are twice as likely to die from myeloma, although they are usually diagnosed at a younger age. (There is less data available on rates in other racial and ethnic groups.)
It is true that there are often genetic differences between the myeloma that occurs in blacks and that in whites. But research suggests that such variations could actually give Black an advantage.
So why the difference in results?
“The main reason is the inequity in health care related to multiple myeloma treatment affecting black patients,” says Srinivas Devarakonda, MD, a hematological oncologist specializing in plasma cell disorders at Ohio State University Comprehensive Cancer Center.
Disparities in the diagnosis and treatment of multiple myeloma
As with any cancer, early detection (and treatment) increases your chances of surviving myeloma. Black patients tend to be diagnosed with this cancer at a later and more advanced stage. And they often don’t have access to the latest and greatest treatments.
When a person has “relapsed refractory myeloma,” meaning it comes back despite treatment, access to state-of-the-art care is critical, says Monique Hartley-Brown, MD, hematological oncologist at Dana-Farber Jerome Lipper Multiple Myeloma Center. (“Relapsed” refers to cancer that comes back; “refractory” means that it has not responded to treatment.)
“Relapsed refractory myeloma is essentially advanced-stage myeloma, and that’s where new treatments come in,” says Hartley-Brown.
In these cases, the gold standard is “triple therapy”, in which three drugs are used at the same time.
“If you go to a local oncologist (rather than a big cancer center), you might only get two, when you should have three,” she says.
If you have tried at least four treatments and have relapsed or your cancer has not 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 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 receive chemotherapy to kill cancer cells, your doctor infuses the cells back into your body.
Black people with myeloma are less likely to be offered triple therapy, CAR-T therapy, or stem cell transplantation.
There’s 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 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 incredible progress, but fewer African Americans are benefiting from it,” says Irene Ghobrial, MD, director of the clinical research program for multiple myeloma at Dana-Farber.
Health care provider bias, being underinsured or uninsured, lack of money to travel to major cancer centers, and low health literacy are all barriers to treatment in minorities, explains Devarakonda.
“Social and cultural beliefs, racial patient-provider discordance, and low social support may also contribute to racial disparities in myeloma care,” he says.
Additionally, only 8% of myeloma clinical trial participants 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 if the FDA ultimately approves them.
The problem is not lack of interest. Black patients are simply not told about clinical trials and are asked to participate as often, Hartley-Brown says.
How is the medical community tackling racial disparities?
Recent research has shown that when myeloma patients are treated similarly, blacks fare just as well – but not better – than whites. So how do you make sure everyone gets the same care?
Change is neither quick nor easy, but there is evidence that progress is being made.
“There has been an increased awareness of health care disparities in cancer care, including in multiple myeloma, and the need to address them in recent years,” says Devarakonda.
Several scientific organizations have added diversity and equity to their list of priorities, he says. Pharmaceutical companies are also starting to demand that more minority patients be included in clinical trials.
Raising awareness of myeloma among minorities is also essential. This helps people at high risk or who have abnormal blood tests defend themselves. That could mean simply asking their doctor to check why they’re anemic or if their kidney function isn’t normal, Hartley-Brown says.
However, she adds that the responsibility cannot rest solely with the patients.
“This is a systemic problem in the medical system as well as 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 big impact on survival rates. She leads research that aims to determine if such a program, combined with the treatment of so-called “precursor” conditions, will result in saving more lives.
Myeloma is usually only diagnosed when it has already developed into a full-blown cancer. But many people first get a precursor condition called monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma.
It’s 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 check-ups, but no real 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,” Ghobrial says. “It’s like waiting to treat early-stage breast cancer until someone has metastasized,” that is, when the cancer has spread.
The PROMISE study, which focuses on early detection, 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.