One in every five of those diagnosed with multiple myeloma are African American. It’s estimated they’ll make up almost 25% of all people with the condition within 10 years.
But there are significant differences when it comes to them getting care. That includes access to clinical trials and groundbreaking treatments like CAR T-cell therapy.
One study found that African Americans are less likely to get CAR T-cell therapy than other racial and ethnic groups. For example, only 1% of participants in a clinical trial for a new treatment were Black.
“Despite all the treatment advances for multiple myeloma like CAR T-cell therapy, access remains limited,” said lead study author Nausheen Ahmed, MD, assistant professor of medicine in the Division of Hematologic Malignancies and Cellular Therapeutics at the University of Kansas Medical Center.
Here’s a closer look at the reasons behind the disparity and what can be done about it.
What Is CAR T-cell Therapy?
CAR T-cell therapy is a multiple myeloma treatment that uses your own cells to fight the disease. T cells, a type of immune system cell, are taken from your blood. Then a gene for a special receptor that sticks to your cancer cells is added to them. It’s called a chimeric antigen receptor (CAR).
The T cells turn into CAR T cells that attack myeloma cells. Large numbers are grown in the laboratory. They’re put in your body a few weeks later.
Two drugs have been approved for CAR T-cell therapy for multiple myeloma in the last 2 years: ciltacabtagene autoleucel and idecabtagene vicleucel. You can only try them if your multiple myeloma has come back or isn’t responding to treatment and you’ve tried at least four other therapies. The research so far suggests CAR T-cell therapy works well. One study found that ciltacabtagene autoleucel stopped the cancer’s progression in 76% of clinical trial participants at the 1-year mark. This is compared to the 48% who got standard care, such as targeted therapy or chemotherapy. A little more than 70% of participants on ciltacabtagene autoleucel also had a complete response, compared to almost 22% in the standard care group.
Why Are There Disparities in CAR T-Cell Treatment?
When you have relapsed or refractory multiple myeloma, it means your cancer has come back or isn’t responding to treatment. In these situations, it’s very important to get access to newer therapies such as CAR T-cell therapy, said Ahmed. But that doesn’t always happen for Black people with the disease for a few reasons. These include:
Socioeconomic barriers. Ahmed’s study found that only about 7% of those who got CAR T-cell therapy in clinical trials made less than $40,000 a year. You have to take at least one month off work for treatment -- which can be expensive -- and have someone with you at all times.
“Most CAR T-cell therapies are also given in certain select institutions, which may not be easily accessible to where (people) live,” said Ahmed.
Her study also found that almost one-third of all CAR T-cell recipients lived more than 2 hours away from the center where they were treated. You have to pay for transportation and for lodging.
“CAR T-cell therapy also requires (them) to spend 4 weeks at or near the treatment center with a caregiver,” said Ahmed. “It may be too difficult for (them) and/or their caregiver to get that time off work. They also may need to find someone to watch their children or grandchildren. The barriers can seem insurmountable.”
Lack of insurance coverage. Ahmed’s study found people without insurance and those on Medicare were less likely to receive CAR T-cell therapy than people with commercial insurance. In general, African American people are slightly more likely to go uninsured than white people.
Structural racism. Some doctors may not even think about bringing up CAR T-cell therapy with their Black patients.
“They may assume that they can’t afford it or that they have other co-existing conditions that won’t make them a candidate,” said Ahmed.
But the guidelines for who’s a good candidate for CAR T-cell therapy are less strict than other treatments, like transplantation. People who are older or who aren’t as healthy to begin with can get the procedure done.
What Can Be Done to Eliminate Disparities?
The best way to ensure African Americans have equal access to CAR T-cell therapy is to make sure it's accessible, says Samer Al’Hadidi, MD, an assistant professor at the University of Arkansas for Medical Sciences’ Winthrop P. Rockefeller Cancer Institute. A study he did found that only 2% to 5% of the 729 participants in clinical trials that resulted in the approval of CAR T-cell therapies were Black.
“When we looked carefully at where the clinical trials for CAR T-cell therapies were, we found that they were often at centers where -- to our surprise -- they were struggling to fill all of the spots,” said Al’Hadidi. “They tended to be concentrated in big cities. For example, there were two centers in New York City that were literally across the street from one another. This could be avoided if we spread out trials and conducted them in areas of the country where there were large pockets of Black people with multiple myeloma.”
Researchers are also studying whether it’s possible to shorten the recovery period after CAR T-cell treatment. It’s currently 30 days, which is why you must stay close to the cancer center. But research Ahmed plans to present at the American Society for Transplantation and Cellular Therapy’s annual meeting suggests it could potentially be shortened to 14 days.
“That’s when we see the most toxicity from treatment, but it drops significantly after that,” said Ahmed. For example, one particularly dangerous side effect, cytokine release syndrome, did not affect those in treatment after day 14. It can trigger high fever, trouble breathing, and severe nausea. The other option would be for CAR T-cell centers to set up outreach clinics that are closer to people for monitoring, said Al’Hadidi. “This way, we make it as easy as possible for (them),” he said.
What You or Your Loved One Can Do
Consider asking your cancer doctor these questions to make sure you’re aware of all available treatments:
Is CAR T-cell therapy right for me? Sometimes a medical provider may not offer it because they assume there are financial barriers, said Ahmed. “Even if you aren’t a candidate now, it doesn’t hurt to learn about it."
What is the closest CAR T-cell therapy center to me? The Blood & Marrow Transplant Information Network’s website also has a list.
Does the CAR T-cell center offer any financial assistance? Sometimes help with lodging is available for those who don’t live close to a treatment center. There also may be social workers or patient navigators who can help you apply for short-term disability.
Finally, make sure you find a cancer doctor you trust.
“Black [people with] multiple myeloma may -- understandably -- have mistrust of medical providers, given how they’ve been treated in the past,” said Al’Hadidi. “If you feel comfortable with your doctor, you’ll be more likely to follow treatment recommendations, which may include CAR T-cell therapy.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
American Cancer Society: “CAR T-cell Therapy and Its Side Effects.”
International Myeloma Foundation: “Disparities in African Americans.”
U.S. Department of Health and Human Services: “Health Insurance Coverage and Access to Care Among Black Americans: Recent Trends and Key Challenges.”
Transplantation and Cellular Therapy: “Socioeconomic and Racial Disparity in Chimeric Antigen Receptor T Cell Therapy Access,” “Overcoming Barriers to Referral for Chimeric Antigen Receptor T Cell Therapy in Patients with Relapsed/Refractory Diffuse Large B Cell Lymphoma.”
New England Journal of Medicine: “Cilta-cel or Standard Care in Lenalidomide-Refractory Multiple Myeloma.”
Journal of the American Medical Association Network Open: “Enrollment of Black Participants in Pivotal Clinical Trials Supporting US Food and Drug Administration Approval of Chimeric Antigen Receptor–T Cell Therapy for Hematological Malignant Neoplasms.”
