Building Trust & Reducing Racial Disparities
- Five leading experts talk to SurvivorNet about how to build trust and reduce racial disparities in multiple myeloma.
- Multiple myeloma is a rare type of blood cancer where white blood cells called plasma cells (the cells that make antibodies to fight infections) in the bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for the healthy blood cells your body needs to fight infection.
- During the event, the experts talked about key steps to take in order to reduce racial disparities including raising awareness, eliminating stigma and increasing diversity in clinical trials.
During this hour-long event, five experts discussed the best ways to address the importance of education and awareness about the rare blood cancer. Multiple myeloma is a rare type of blood cancer where white blood cells called plasma cells (the cells that make antibodies to fight infections) in the bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for the healthy blood cells your body needs to fight infections.
Read MoreEliminating Stigma
One of the key ways to raise awareness about multiple myeloma is to eliminate the stigma surrounding the disease. By ending the stigma, this can allow for more open conversations among family members and communities about their diagnosis and treatment. This not only increases awareness, but helps educate others about the disease, risks and treatment options.
Related: See More About How to Build Trust and Reduce Racial Disparities in Multiple Myeloma
“What I think we need to do is empower the patients themselves to actually tell their family members,” Dr. Brandon Blue, a hematologist-oncologist at Moffitt Cancer Center, explains. “Unfortunately in certain communities talking about their cancer is kind of frowned upon when sitting around a dinner table. Right. I think that the best thing we can do is encourage them to not keep this a secret from their family. Don’t keep this a secret from their children. Really kind of let them know that multiple myeloma is out there and there’s something that we can do about it. I think that’s really the best way that we can do to be able to reach everyone.”
Accessible Care & Treatment
Perhaps one of the most important aspects of cancer care and reducing racial disparities is prioritizing access to treatment for all patients. “It’s very important for us to address this access to care and the communication that we need as oncologists to reach what we want to convey directly to the patient and vice versa,” says Dr. Ajay Nooka, a hematologist-oncologist at the Winship Cancer Institute.
Related: As We Enter 2021, the Cancer Care Community Talks About What the Future Holds
Multiple myeloma may be considered a rare cancer, but it consists of significantly more health disparities compared to other types of cancers. For example, Black communities typically see more multiple myeloma diagnoses compared to other communities. This is largely due to Black communities having higher rates of conditions that can lead to myeloma. This being the case, it’s imperative that all communities have the best resources available and equal access to care.
Dr. Jens Hillengass breaks down risk factors associated with multiple myeloma
Increasing Diversity in Clinical Trials
Multiple myeloma can be a tricky disease to treat, and that’s why clinical trials can be a key resource in helping patients enter remission. However, there’s been a constant problem with the lack of diversity among clinical trial participants particularly within Black populations. There’s been a distrust of clinical trials among Black communities since the horrific Tuskegee experiment, but clinical trials can be a life-saving resource for many.
“We have done studies where we show that if patients are in clinical trials, then the outcome is similar between whites and Blacks,” says Dr. Vincent Rajkumar, a hematologist-oncologist at the Mayo Clinic. “So it’s really an access question. Do they have access to the best treatments? We’ve even shown that there are some treatments in myeloma that work even better in Black patients than they do in whites.”
Dr. Rajkumar says he’s asked the Food and Drug Administration (FDA) to implement clinical trial requirements for participation by race. This would include a mandate that least 10% of trial participants are Black in order to for a drug to be considered for approval.
“That’s music to my ears, that makes my day,” Dr. Luciano Costa, a hematologist-oncologist at the O’Neal Comprehensive Cancer Center at University of Alabama, says. “We have cohorts and subsets in our trials based on biological grounds and that’s totally acceptable. We have trials that have inclusion based on gender, we have trials that have inclusion based on age and we accept that. A racial subset is justifiable on the moral fairness grounds, but if you don’t want to go there, it’s justifiable under biological grounds.”
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