In 2015, Valarie Traynham visited her GP after weeks of severe exhaustion, severe nosebleeds, back pain and flu-like infections.
Her primary care doctor found high protein levels in Traynham’s blood tests and referred her to a hematologist-oncologist, a doctor who treats blood cancers. The visit to a hematologist did not faze Traynham, who had suffered from anemia, but she only later realized that the doctor was also an oncologist and her condition may have been more serious than she thought.
Traynham, then 42, received further tests, including full-body X-rays and a bone marrow biopsy, which led to a diagnosis of multiple myeloma, a disease she had never heard of. She was told to begin treatment immediately.
After three sessions, Traynham became so ill that she needed a wheelchair to get her from the car to the facility. She felt something was wrong and her aunt, a breast cancer survivor, suggested she see a specialist.
“When I was diagnosed with myeloma at a local community center, I didn’t want to seek a second opinion because I just wanted to start treatment and get rid of the myeloma,” Traynham said. “I remember the doctor saying, ‘You can go if you want, but they’ll tell you the same thing I tell you.'”
Traynham went anyway, a decision that might have saved her life. It was also the beginning of her journey to advocate for multiple myeloma awareness and education in the black community.
What is multiple myeloma?
Multiple myeloma is the second most common blood cancer in the United States. African Americans and Hispanics are disproportionately affected by the disease. African Americans make up 20% of all patients with multiple myeloma, despite making up only 14% of the population. While some environmental factors can increase the risk of multiple myeloma, the disease is linked to MGUS, a blood disorder that is a risk factor for cancer and is more common in Africans and African Americans. According to the International Myeloma Foundation, Hispanic people are also more likely to develop multiple myeloma than non-Hispanic whites and are typically diagnosed at a younger age.
African American patients are also twice as likely to die from multiple myeloma as white patients. However, a 2024 study found that if they had equal access to care and treatment, they were just as likely to survive as white patients.
“I typically divide the differences in mortality rates into two categories related to health in general and then specifically to multiple myeloma,” said Dr. Joseph Mikhael, medical advisor to the International Myeloma Foundation and an expert on differences in multiple myeloma. “In terms of overall health, these disparities include systemic racism, the healthcare system and social determinants of health, which are strongly influenced by socioeconomic impacts. Myeloma-specific reasons primarily include delayed diagnosis and limited access to important therapies.”
Mikhael said the average myeloma patient, regardless of race, has a three to six month delay in diagnosis and visits a primary care doctor with symptoms an average of three times before getting the correct diagnosis. For Black and Hispanic patients, the delay is an average of three to six months longer, often due to a lack of access to primary care, distrust of the health care system and insurance limitations on testing.
Other health conditions that are more common in black and Hispanic patients can mimic the symptoms of multiple myeloma and lead to delayed diagnosis. Multiple myeloma symptoms like Bone pain, fatigue, anemia and kidney dysfunction are also common symptoms of diabetes, arthritis and chronic kidney disease. Black and Hispanic patients may also have more pre-existing comorbidities. For example, obesity is a risk factor for multiple myeloma, and nearly half of all black Americans live with obesity.
Black and Hispanic patients are less likely to receive therapies that improve survival rates, such as combination therapies, stem cell transplants and T-cell therapies. Participation in clinical trials of novel and evolving therapies is also low, often due to a lack of information and education about trials, limited access to academic centers and facilities offering specialized treatments, and less nursing support during the process. African Americans make up only 8% of participants in cancer clinical trials.
Lack of access is not always financially related. Patients who live in rural areas or rely on community health facilities can experience delays in treatment, as was the case for Traynham, even though she was able to drive from her home in Aurora, Illinois, to a specialist in Chicago.
When she visited the myeloma specialist, she realized how different the treatment was from her previous doctor, who treated all forms of cancer. The myeloma specialist told Traynham he didn’t know why she was given older therapy when there were more advanced treatments available.
The importance of community voices
The support of her aunt and her friend, who was also a cancer survivor, helped Traynham learn the importance of seeking additional care. That’s why she’s now a vocal advocate for black patients with multiple myeloma, leading support groups and discussing the importance of seeing specialists, getting second opinions after diagnosis and participating in clinical research studies.
“When I was looking for support, there weren’t many Black people talking and there weren’t Black faces in sight, even though we are disproportionately affected by multiple myeloma,” she said. “I don’t want patients to have to go through what I went through and think that they are alone and don’t know that there are different treatment options and that they have a voice in their care. Cancer has stolen a lot from me, so I have chosen not to be silent about it.”
Expanding programs like Standing in the Gaap, launched in 2016, also helps advance equitable care and address the experiences of African Americans and other communities with multiple myeloma. The program launched a major multiple myeloma survey this year to uncover factors that cause barriers and gaps in care. The survey will reach more than 1,000 people, including people with multiple myeloma, caregivers and physicians, many of whom come from rural communities who face these gaps and barriers. The results of the survey, one of the largest multiple myeloma surveys ever conducted in the United States, will promote community engagement and improve culturally responsive approaches to care. Patient advocacy organizations, including those serving medically underserved patients, provided input into the development of the survey.
Mikhael, who has worked with Standing in the Gaap, is also involved in M-Power, a program designed to help eliminate disparities in multiple myeloma by focusing on community engagement, cultural competency training for primary care clinicians, and improving patient care. The program also works to increase diversity in clinical trials and pairs medical students from historically black colleges and universities with multiple myeloma experts for projects on health disparities. The program will be expanded to Latino communities, Mikhael said.
“I have conducted programs across the country – in churches, community centers, fraternities/sororities, barbershops and other venues to raise awareness of multiple myeloma, gain confidence in the medical community and provide support to a community so deeply affected by this disease,” he said.
Traynham’s journey was not easy. In addition to multiple myeloma, she also battled a breast cancer diagnosis at age 46. She is now 52 years old, cancer-free and describes this time as her “blooming stage”.
“It is so important that as African Americans we have safe, trusted spaces where we can be vulnerable, ask questions and have a sense of connection and community,” she said. “In the cancer community, we’re not always present. That’s one of the reasons I’m so passionate about making sure people feel seen, heard and understood during this cancer journey.”
This educational resource was created with support from Bristol Myers Squibb, creators of the Standing in the Gaap program and member of the HealthyWomen Corporate Advisory Council.
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