Elijah Alexander’s first sign was pain in his feet, which doctors attributed to his former career as a pro football linebacker. Malcom Ivy’s symptoms initially appeared during the pandemic, so he chalked up his reduced appetite and exhaustion so extreme it affected his usual routine to a COVID-19 infection. Armaray Campbell experienced persistent back pain, which his physician believed was due to arthritis.
Despite the differences in their symptoms, all three men received the same diagnosis when their worsening health issues landed them in the emergency room: multiple myeloma, a disease neither they nor their wives had ever heard of. And all three, not so coincidentally, were African American.
Multiple myeloma is a rare blood cancer that affects plasma cells, which are made in bone marrow. As plasma cells become cancerous, they crowd out other blood cells, which can lead to tumors in bones and a greater susceptibility to infections. For reasons that remain unclear, the disease is more prevalent in Black communities than in other groups and is particularly prevalent among African-American men over the age of 45. While African Americans comprise about 14% of the U.S. population, they constitute 20%, or one in five, of multiple myeloma patients. And that percentage is growing, projected to reach one in four by 2034.
The disparities don’t end there. African Americans experience a longer delay from multiple myeloma onset to diagnosis, and they have less access to advanced treatments that can contribute to better outcomes. A study in the journal Blood Advances found that the median time from diagnosis to the beginning of novel therapy treatment for the disease was nearly twice as long for Black patients (5.2 months) as for white patients (2.7 months).
Meanwhile, African Americans make up only 8% of participants in cancer clinical trials, slowing progress toward understanding the differences in prevalence and treatment of multiple myeloma in nonwhite populations.
In response to these inequities, Johnson & Johnson launched the That’s My Word campaign in 2023. Its goal is to increase awareness of multiple myeloma among African Americans and provide critical information and resources for patients, caregivers and the community at large.
We’re able to leverage the patient’s immune system, getting the disease under control while talking about not just length of life but quality of life.
While working to close the racial disparities surrounding multiple myeloma is a crucial company goal, Johnson & Johnson is also continuing its long history of innovating treatments, including new immune-based and cellular therapies, says Imran Khan, M.D., Ph.D., Vice President of Medical Affairs, Oncology, Johnson & Johnson Innovative Medicine.
“Multiple myeloma has really undergone a transformation over the last decade in terms of both the number of treatments and the prognosis for the disease,” says Dr. Khan. “We’re able to leverage the patient’s immune system, getting the disease under control while talking about not just length of life but quality of life.”
Still, there is an unmet clinical need due to the complexity of the disease. Some patients do not achieve remission even after intensive treatment—or they reach remission, but abnormal cells return. The overall survival rates remain low, though they are improving.
Dr. Khan stresses that much more needs to be done—such as getting these treatments to patients. “Not everyone has access to a large cancer center, so we’re ensuring that many of our therapies can be administered by a community oncologist in a clinic,” he says.
Another focus is identifying the disease sooner, as well as increasing Black enrollment in clinical trials to better guide new treatments. “In two recent studies we had representation of between 18 and 24% African-American patients, which is far above the current industry standard,” says Dr. Khan.
Alexander, Ivy and Campbell shared one essential advantage when they were diagnosed: a life partner who became a devoted care partner and then a dedicated advocate for multiple myeloma awareness and equity. All three spouses are part of Johnson & Johnson’s That’s My Word campaign, and they’ve also taken the lead spearheading equity and educational efforts for other cancer organizations. Here’s how they’ve redirected their shock and grief into activism and hope.
Kimberly Alexander
In 2005, Elijah Alexander had been retired from the NFL for two years. He was busy starting his own company and coaching their two young sons in football and baseball in Dallas, where the Alexanders lived. But he was plagued by mysterious pains in his feet, which several doctors blamed on his years as a pro athlete.
On his way to Costa Rica later that year, Elijah suddenly felt very ill, and a local doctor urged him to return to the U.S. Once home, Elijah collapsed, and Kimberly rushed him to urgent care. The physician there advised going directly to the ER. “You could go home, but I can’t promise you he’s going to wake up,” the physician bluntly told her.
At the hospital, Elijah was diagnosed with advanced-stage multiple myeloma. “We had never heard of it,” says Kimberly. “And Elijah didn’t fit the typical cancer patient profile—he was only 35 and looked like he could still be on the football field.” They suspected the illness he developed in Costa Rica stemmed from organ failure caused by the disease.
Elijah soon received a stem-cell transplant, which meant undergoing chemotherapy to kill the cancerous plasma cells and then transplanting healthy stem cells into his bone marrow. It’s a common treatment for multiple myeloma, and it allowed him to live for five more years, during which he went in and out of remission. He passed away in 2010.
Her care partner journey: “I was 32 when Elijah was diagnosed,” says Kimberly, who became her husband’s primary care partner and did everything she could to learn about the disease. “My focus was on keeping him as healthy as possible and things normal for our sons.”
What she regrets not doing: asking for help taking care of a husband debilitated by a life-threatening illness. “That’s what I stress to people experiencing what I went through—if someone offers help, take it.” She also advises carving out “little escapes.” Hers was an exercise class. “I would go home feeling replenished to help my husband and children,” she recalls.
How she advocates for equity: “After he was diagnosed, Elijah participated in blood-cancer conferences and started a nonprofit to help pay bills for multiple myeloma patients and kids with cancer,” says Kimberly. “I promised him I’d keep doing the work. Eventually I felt I’d be more beneficial helping in a larger, well-oiled machine, so I started working with the Leukemia & Lymphoma Society. Today, she assists with fundraising and awareness campaigns for several cancer organizations, as well as speaking out with That’s My Word.
In 2021, Kimberly launched the Level Health Agency, a healthcare communications agency focused solely on reducing disparities in all diseases, not just multiple myeloma. Having gained knowledge of how health equity and lack of access impact minority communities, she felt compelled to help close disparities. “One of our main focuses is to urge people to be part of clinical trials,” she says. “There’s a lot of fear around that for minorities, fears that they won’t get proper care. But if we’re not part of the studies, we can’t be part of the cure.”
Michelle Ware-Ivy
Before the pandemic, Michelle Ware-Ivy and her husband were empty nesters in the Chicago area who enjoyed traveling. Malcom Ivy, a business executive who remained an avid basketball player in his mid-50s, felt well—despite blood tests in 2018 and 2019 that revealed abnormalities doctors never explained.
After the pandemic hit in 2020, Malcom developed exhaustion so severe, he was barely able to rise from the sofa. He also lost his appetite. When he could no longer walk up the stairs, Michelle took him to the ER. While waiting outside because of COVID-19 protocols, she received the news by cellphone that his COVID test came back negative but he needed an immediate blood transfusion. One week later, after many transfusions, a bone-marrow biopsy revealed Malcom had multiple myeloma.
“We’d never heard of that, and we were devastated,” recalls Michelle. “Looking back, those abnormal blood test results should have been a clear indication for doctors to consider multiple myeloma. Instead, the disease went undetected and was misdiagnosed as early-stage diabetes.”
Malcom willingly participated in clinical trials and received four different lines of therapy throughout his disease course. He initially responded well to a stem-cell transplant, “even shoveling snow when we finally got home from the hospital,” says Michelle. But he relapsed a few months later. Despite receiving cutting-edge new treatments like immunotherapy and CAR-T therapy, Malcom’s disease advanced, leading to reoccurring relapses. “His earthly life ended in 2023, but he’ll always remain in my heart,” she says.
Her care partner journey: Michelle had an extra advantage as Malcom’s caregiver: Her position on the business side of a biotech company allowed her to rely on colleagues versed in clinical trials and diagnostics as a second opinion for the best treatment path for her husband. “It was a blessing to have access to medical information and insights,” says Michelle. She and Malcom were also sustained by their faith as they rode the highs and lows of cancer treatment.
How she advocates for equity: “Malcom and I talked about establishing a foundation to share the word on multiple myeloma while he was going through treatment,” recalls Michelle. When she was told that Malcom had run out of options, “I made a promise to him that I would be an intercessor—the voice for the voiceless to amplify awareness and change for the African-American community.”
Aside from her advocacy work for That’s My Word, Michelle started the Malcom Orlando Ivy Foundation in late 2023 to amplify community awareness about symptoms and educate about the complexities of the disease and its greater danger for Black people. The foundation offers a support program for multiple myeloma patients and their care partners. It aims to inspire hope and bridge science and faith to foster mental wellness as patients and care partners navigate the challenging diagnosis and treatment journey. Advocating with researchers, legislators and insurance companies to establish a multiple myeloma early screening protocol—like the screening guidelines around breast and colon cancers—is another goal.
Because her faith helped her grapple with her husband’s illness, Michelle has also made African-American churches and national Black events a focus of her educational outreach. “My heart compels me to this work,” she says. “I feel a sense of giving back to my community by passing on the knowledge I’ve gained.”
Marsha Calloway-Campbell
Marsha Calloway-Campbell and Armaray Campbell, high-school sweethearts living in Cincinnati, were leading busy lives in 2016. Besides traveling to their college-age daughters’ basketball games, they pursued time-consuming careers: she as a lawyer and consultant; he as an entrepreneur.
That fall, Armaray, an ex-athlete who still worked out five to six days a week, was slowing down and developing back pain, which a doctor thought could have been caused by previous lumbar surgery and arthritis. Then one day, he collapsed on the way to physical therapy.
The couple immediately went to the ER. “The nephrologist said his kidneys were failing, and she didn’t know how he was still standing,” says Marsha. “The emergency room doctor said to me, ‘I think it’s myeloma.’ I look at him, puzzled, and asked, ‘Is that cancer?’”
A bone-marrow biopsy confirmed the doctor’s suspicions, and Armaray suddenly found himself on a roller coaster of treatments. He had an allergic reaction to the first therapy, making his lungs bleed; he started dialysis because myeloma had destroyed his kidneys. Eventually he had a stem-cell transplant, which, along with monthly immunotherapy treatment, has kept his myeloma from advancing.
“He had a delayed diagnosis, a missed diagnosis,” says Marsha. “The physical therapist had shown me the X-ray of his spine and pointed out what she thought was arthritis, but were actually lesions from myeloma.” The delay meant that Armaray, 65, is currently seeking a kidney transplant. But he is alive to play with his now 4-year-old grandson, “which is part of what keeps him going,” she says.
Her care partner journey: When Armaray had to be hospitalized for a month following his diagnosis, she spent all but two of those nights with him. “I was devastated—I wasn’t eating, I lost weight—and I had to say to myself, ‘Marsha, you’re not doing anyone any good.’ That’s when I started looking at him as my client. I’m a legal advocate, that’s what I know.”
A friend advised her to write down in a binder every symptom, reaction and treatment Armaray experienced, and she became “one of his medical team,” she says. “I could connect the dots and help coordinate them. That was the beginning of advocacy for me. My advice to caregivers now is to keep a binder, but also let your village help you, whether that’s extended family, church family, neighbors.”
How she advocates for equity: “Once Armaray was stable enough, I wanted to give back,” says Marsha. “There are so many disparities and biases in healthcare, leading to missed diagnoses for minorities. I’ve had patients tell me if you go to the hospital and say you have back pain, sometimes they think you just want narcotics.”
Besides her outreach as part of That’s My Word, Marsha connected with HealthTree, a global nonprofit working toward a cure for blood cancers, and created the organization’s education-focused Black Myeloma Health Initiative. One of the campaigns she came up with urges Black patients with unexplained symptoms to ask, “Doctor, could this be multiple myeloma?” Last year, she joined a health equity consultancy to lead their diversity and inclusion division.
“At events, I often have someone at the table thanking me profusely for providing information on multiple myeloma and we end up in tears, hugging,” she says. “For 40 years I’ve been at trade-show booths, and nobody was hugging me tearfully when I told them about being a lawyer.”
