For more than a year, Diane Hunter, now 72, experienced vague symptoms – pain in her spine and hips, nausea, fatigue, thirst and frequent urination. Her doctor ruled out diabetes before finally chalking up her ailments to age.
But months of severe back pain eventually landed her in the emergency room, where a doctor suggested Hunter might have multiple myeloma. Hunter's first question was, “What is this?”
Multiple myeloma is a cancer that develops in the plasma cells of the bone marrow, crowding out healthy blood cells and damaging bones. It is one of the most common types of blood cancer and the most diagnosed among African Americans. The death rate from multiple myeloma is also higher among African Americans than among white people, with a number of studies showing that in addition to the biology of the disease, there are also social factors such as socioeconomic status and lack of access health insurance or medical services delay timely diagnosis.
The delayed diagnosis happened to Hunter, a black woman from Montgomery, Alabama. She said her doctor rejected an endocrinologist's recommendation to refer her to a hematologist after finding high levels of protein in her blood. Then, she said, he also refused to order a bone marrow biopsy after an emergency room doctor suggested she might have multiple myeloma. According to her, she was tired of it, she found a new doctor, was examined and found out that she really had a disease.
Monique Hartley-Brownmultiple myeloma researcher Dana-Farber Cancer Institute In Boston, Hunter's experience is quite common, especially among Black patients living in underserved communities, Hunter said.
“On average, patients visit their primary care physician three times before they receive an accurate diagnosis,” Hartley-Brown said. “Black Americans experience an even longer delay from the onset of symptoms to diagnosis. Meanwhile, the disease wreaks havoc, causing fractures, severe anemia, fatigue, weight loss, and kidney problems.”
Black and Hispanic patients are less likely to receive newer treatments, and when they do, they are more likely to do so at later stages of the disease than white patients, according to the Multiple Myeloma Research Foundation. An analysis published in 2022 An analysis of racial and ethnic disparities in multiple myeloma drug approval studies submitted to the FDA concluded that black patients made up only 4% of participants, despite making up approximately 20% of people living with the disease.
Now, despite significant progress in understanding the biology of multiple myeloma and its treatments, these racial disparities may widen as federal cuts to cancer research And backlash to diversity and inclusion efforts. Although few multiple myeloma experts were willing to speak openly about the impact of funding cuts, Michael AndreiniPresident and CEO of the Multiple Myeloma Research Foundation, wrote that the cuts would affect the National Institutes of Health and the National Cancer Institute. set future innovations in danger.
“Even before these potential cuts, funding for myeloma treatment was lagging,” he wrote before the cuts were completed. “The myeloma dedicated budget has been reduced significantly. Myeloma accounts for nearly 2% of all cancers, but accounts for less than 1% of the NCI budget.”
The disease is already difficult to diagnose. Because multiple myeloma usually diagnosed when the patient is over 65 years of age (African Americans tend to diagnosed five years younger(on average), common symptoms such as lower back pain and fatigue are often attributed to simply getting older.
This is exactly what happened to Jim Washington of Charlotte, North Carolina. He was 61 when excruciating hip pain forced his regular tennis games to an abrupt halt.
“I decided I had done something to hurt myself,” Washington said. “But I had played tennis all my life, and this pain was different from anything I had ever felt before.”
Washington is lucky to have a concierge doctor and premium health insurance. He soon had an X-ray, which revealed damage to his spine, and was referred to an oncologist, who discovered a cancerous tumor. A subsequent biopsy and blood tests confirmed he had multiple myeloma.
Washington had to undergo several weeks of high-dose chemotherapy, followed by a so-called autologous stem cell transplant, in which his own stem cells were used to grow healthy blood cells in his body. It was a grueling process that ultimately left him with clean bill of health. Over the next few years, doctors monitored him closely, including annual bone marrow biopsies.
Before treatment, he said, myeloma had invaded 60% of his blood cells. Stem cell transplantation reduced these levels to zero. However, after about five years, his multiple myeloma rate rose again to 10% and required additional treatment.
But Washington had been closely following the latest research and believed he had reason to be optimistic. FDA approved the first CAR T-cell therapy for multiple myeloma in 2021.
Hartley-Brown said the absence of Black patients in multiple myeloma drug clinical trials raises concerns about whether trial results apply equally to the Black population and may help explain why treatment advances have been less effective in Black patients.
She cited several reasons for low research participation rates, including a historical distrust of the medical establishment and a lack of available clinical trials. “If you live in an underserved or underrepresented area, the hospital or local physician may not have clinical trials available, or that patient may have restrictions on access to that site related to the clinical trial,” she said.
Washington, a black patient, appears to have avoided that pitfall by taking advantage of the latest treatments both times. In January, he began six weeks of chemotherapy with a three-drug combination: Velcade, Darzalex and dexamethasone, before undergoing CAR T-cell therapy.
To do this, doctors collected Washington's T cells, a type of white blood cell, and genetically modified them to better recognize and destroy cancer cells before reintroducing them into his body. He did not require hospitalization after the transplant and was able to take daily blood tests at home. His energy level was much higher than during the first treatment.
“I was in a very privileged position,” Washington said. “The prognosis is very positive and I feel good about where I am at the moment.”
Hunter also considers herself lucky despite the late diagnosis. Following her diagnosis in January 2017, she underwent five months of immunotherapy with a three-drug combination (Revlimid, Velcade and dexamethasone), followed by a successful stem cell transplant and two weeks in hospital. She has been in remission since July 2017.
Hunter, who now co-leads a support group and is a patient advocate, said stories like Washington's and her own offer hope despite dwindling research.
In the eight years since treatment, she says she has seen attitudes toward multiple myeloma, long described as a treatable but incurable disease, begin to change as more patients remain healthy for years. She said she has even met people living with the disease for 30 years.
“We hear the word cure now,” Hunter said.
