A Lack of Awareness Around This Cancer Is Costing Black Lives
Advocacy A lack of awareness surrounding multiple myeloma is costing lives, but one organization is stepping forward to make change.
Do You Know the 5 Risk Factors for Multiple Myeloma?
Know the risk factors
Doctors don't know why some cells become myeloma cells and others don't. For most people who have myeloma, there are no obvious reasons why they developed the disease. However, there are some factors that may increase the risk of developing myeloma, including:
Black people are nearly twice as likely as white people to develop myeloma.
Most people who develop myeloma are over 50 years old.
More men than women develop myeloma.
4. Medical History
People with a history of MGUS (a condition in which an abnormal protein, known as monoclonal protein or M protein, is in the blood).
New research suggests that obesity is linked to a higher rate of myeloma.
If you feel like you may be at risk, watch for signs and symptoms, talk with your doctor and learn more about myeloma.
SOURCE: The Leukemia and Lymphoma Society
Because multiple myeloma is among the least common types of cancer, it can go misdiagnosed due to doctors’ and patients’ lack of knowledge about the disease. Among middle-age African Americans, who are at a disproportionately higher risk of this cancer than their white counterparts, this can be especially true.
“This particular blood cancer is more common in men than women and, importantly, African Americans are two times as likely to be diagnosed with myeloma as white Americans,” says Elisa Weiss, Ph.D., senior vice president of Patient Access and Outcomes at the Leukemia and Lymphoma Society (LLS). “Recent studies show that African Americans are significantly less likely to receive the newest treatments and combination therapies, and more likely to experience treatment delays, including transplant delays, than white Americans. This is particularly true for low-income African Americans. On top of this, African Americans are much less likely to enter a clinical trial than white Americans.
A narrow window
Delayed diagnosis is a particular problem, as patients may let symptoms like fatigue, fever, infections and bone pain persist without seeking care and, sometimes, primary care doctors may not notice the warning signs themselves, she notes. “Raising awareness about the disease is critical; when somebody has the disease, it’s important to educate them about the state-of-the-art treatments and how they can get access,” says Weiss, explaining that combination therapy is at the forefront of myeloma treatment.
“Fortunately, education programs, such as LLS’s Myeloma Link program, are trying to change these realities,” says Karen Demairo, executive director of education and integration for the LLS. Myeloma Link is launching in a number of major cities across the country, where LLS works with a wide range of trusted organizations including churches, senior centers and community health centers to raise awareness among African Americans about multiple myeloma incidence and treatment. Please visit lls.org/myelomalink for more information.
“In addition, LLS offers free services nationally and in communities to help myeloma and all blood cancer patients receive professional advice on everything from treatment, financial resources, clinical trials, nutrition and more,” says Demairo. “Patients and caregivers can reach LLS Information Specialists, who are master’s-level oncology social workers, nurses and health educators, for free one-on-one personalized support and information via phone at 800-955-4572 or email at www.LLS.org/informationspecialists.”
Many new therapies for myeloma have been approved in the last few years, however the disease remains incurable. LLS has invested approximately $100 million in myeloma research since 2009 and more than $180 million in patient support and services. More than 50 percent of myeloma patients live five years or more, up from 25 percent in the 1970s. However persistent pain is a common issue among this population, Demairo points out. Ensuring these individuals have the proper support and education about treatment options is key.