Better Treatments Buoy Multiple-Myeloma Patients, Bound by Research Cuts and Racial Disparities

For more than a year, Diane Hunter, now 72, had had vague symptoms: spinal and hip pain, nausea, exhaustion, thirst and frequent urination. His treating doctor had ruled out diabetes before finally attributing his illnesses to aging.

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 that?” »

Multiple myeloma is a cancer that grows in the plasma cells of the bone marrow, crowding out healthy blood cells and damaging the bones. It is one of the most common and most diagnosed blood cancers among African Americans. The mortality rate from multiple myeloma is also higher among African American patients than among whites, with a number of studies showing that in addition to the biology of the disease, societal factors such as socioeconomic status and lack of access to health insurance or medical services delay timely diagnoses.

A late diagnosis is what happened to Hunter, a Black woman from Montgomery, Alabama. She said her primary care doctor rejected a recommendation from her endocrinologist to refer her to a hematologist after seeing high protein levels in her blood. Then, she said, he also refused to order a bone marrow biopsy after the emergency room doctor suggested she might have multiple myeloma. Fed up, she said, she found a new doctor, got tested and learned she did indeed have the disease.

Monique Hartley-Brown, a multiple myeloma researcher at the Dana-Farber Cancer Institute in Boston, said Hunter’s experience is fairly common, particularly among black patients who live in underserved communities.

“On average, patients visit their primary care physician three times before receiving an accurate diagnosis,” Hartley-Brown said. “The time from symptom onset to diagnosis is even longer for Black Americans. Meanwhile, the disease takes its toll – causing fractures, severe anemia, fatigue, weight loss, kidney problems.”

According to the Multiple Myeloma Research Foundation, black and Hispanic patients are also less likely to receive the newer treatments and, when they do, they are more likely to do so later in the course of their illness than white patients. An analysis published in 2022 of racial and ethnic disparities in multiple myeloma drug approval trials submitted to the FDA concluded that Black patients made up only 4% of participants, despite making up about 20% of people living with the disease.

Today, although significant progress has been made in understanding the biology of multiple myeloma and how to treat it, these racial gaps may widen amid federal budget cuts to cancer research and backlash against diversity and inclusion efforts. While few multiple myeloma experts were willing to speak on the record about the impact of funding cuts, Michael Andreini, president and CEO of the Multiple Myeloma Research Foundation, wrote that budget cuts at the National Institutes of Health and its National Cancer Institute put future innovations at risk.

“Even before these potential reductions, myeloma funding was lagging,” he wrote before the cuts were finalized. “The myeloma-specific budget has decreased significantly. Myeloma accounts for nearly 2% of all cancers, but it receives less than 1% of the NCI budget.”

The disease is already difficult to diagnose. Because multiple myeloma is typically diagnosed when a patient is over 65 (African Americans tend to be diagnosed five years younger on average), common symptoms such as lower back pain and fatigue are often attributed to simple aging.

That’s what happened to Jim Washington of Charlotte, North Carolina. He was 61 when excruciating hip pain suddenly interrupted his regular tennis games.

“I thought I did something that hurt me,” Washington said. “But I had played tennis my whole life and this pain was unlike anything I had felt before.”

Washington was fortunate to have a concierge doctor and premium health insurance. In quick succession, he underwent X-rays that revealed a lesion on his spine and was referred to an oncologist, who identified a cancerous tumor. A biopsy and subsequent blood tests confirmed he had multiple myeloma.

Washington underwent weeks of high-dose chemotherapy, followed by what’s called an autologous stem cell transplant, which used his own stem cells to regrow healthy blood cells in his body. It was a grueling process that ultimately left him in good health. Over the next few years, his doctors monitored him closely, including performing an annual bone marrow biopsy.

Before treatment, he said, the myeloma had infiltrated 60 percent of his blood cells. Stem cell transplantation brought these levels down to zero. However, after about five years, his multiple myeloma rate had risen to 10% and required additional treatment.

But Washington had closely followed the latest research and believed he had reason to be optimistic. The FDA had approved the first CAR T cell therapy for multiple myeloma in 2021.

Hartley-Brown said the lack of Black patients in multiple myeloma drug approval trials raises concerns about whether trial results are also applicable to the Black population and may help explain why therapeutic advances have been less effective in Black patients.

She cited several causes for low trial participation, including 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 community physician may not have clinical trials available, or the patient may have difficulty getting to that clinical trial-affiliated location,” she said.

Washington, a black patient, seems to have avoided this trap, having benefited from the latest treatments each time. 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 reinjecting them into his body. He did not need to be hospitalized after the transplant and was able to take daily blood tests at home. His energy level was much higher than during his first treatment.

“I’ve been in a very privileged position,” Washington said. “The prognosis is very positive and I feel good about my current situation.”

Hunter also considers herself lucky despite a late diagnosis. After 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 the hospital. She has been in remission since July 2017.

Hunter, now co-leader of a support group and patient advocate, said stories like Washington’s and his own give hope despite research cuts.

In the eight years since her treatment, she said, she has seen the thinking around multiple myeloma — long described as a treatable but incurable disease — begin to change as a growing subset of patients remain disease-free for many years. She says she has even met people living with the disease for 30 years.

“The word ‘heal’ is now being heard,” Hunter said.

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