Better treatments support multiple myeloma patients, limited by research limitations and racial disparities

For more than a year, Diane Hunter, 72, had mysterious symptoms — pain in her spine and hips, nausea, fatigue, thirst and frequent urination. Her primary care physician ruled out diabetes before ultimately attributing her illnesses to her advanced age.

But months of severe back pain eventually brought her to 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 bone marrow plasma cells, crowding out healthy blood cells and damaging bones. It is one of the most common types of leukemia and the most frequently diagnosed among African Americans. The death rate from multiple myeloma is also higher among African American patients than among white people, with a number of studies showing that, in addition to the biology of the disease, there are societal factors such as socioeconomic status and marital status. Lack of access To health insurance or medical services delay timely diagnosis.

A late diagnosis is what happened to Hunter, a Black woman in Montgomery, Alabama. She said her primary care physician rejected an endocrinologist’s recommendation to refer her to a hematologist after finding a high level of protein in her blood. He then also declined a request for a bone marrow biopsy after the ER doctor suggested she might have multiple myeloma, she said. She said she was fed up, found a new doctor, got tested, and learned she actually had the disease.

Monique Hartley Browna researcher in multiple myeloma in Dana-Farber Cancer Institute In Boston, he said Hunter’s experience is fairly common, especially among black patients who live in underserved communities.

“On average, patients see their primary doctor three times before they are accurately diagnosed,” Hartley-Brown said. “The delay from symptoms to diagnosis is longer for black Americans. Meanwhile, the disease is wreaking havoc — causing fractures, severe anemia, fatigue, weight loss, and kidney problems.”

Black and Latino patients are also less likely to receive the latest treatments, according to the Multiple Myeloma Research Foundation, and when they do, they are more likely to do so later in their illness than white patients. that Analysis published in 2022 From racial and ethnic disparities in multiple myeloma drug approval trials submitted to the FDA, it concluded that black patients made up only 4% of participants despite being about 20% of those with the disease.

Now, although significant progress has been made in understanding the biology of multiple myeloma and how to treat it, these racial gaps may be widening amid… Federal 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 the funding cuts, Michael Andreinipresident and CEO of the Multiple Myeloma Research Foundation, wrote these cuts for the National Institutes of Health and its National Cancer Institute Developing future innovations at stake.

“Even before these potential cuts, myeloma funding was lagging behind.” books Before the cuts are finished. “The budget for myeloma has declined significantly. Myeloma accounts for approximately 2% of all cancers, yet receives less than 1% of the National Cancer Institute’s budget.”

The disease is already difficult to diagnose. Because multiple myeloma It is usually diagnosed When the patient is over 65 years of age (African Americans tend to be more so). He was diagnosed five years youngerOn average), common symptoms like lower back pain and fatigue are often attributed to simply getting older.

That’s what happened to Jim Washington from Charlotte, North Carolina. He was 61 years old when excruciating pain in his hip brought his usual tennis games to an abrupt halt.

“I thought I did something to hurt myself,” Washington said. “But I had been playing tennis my whole life, and this pain was unlike anything I had ever felt before.”

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

Washington underwent weeks of high-dose chemotherapy, followed by what is known as an autologous stem cell transplant, which used his own stem cells to regrow healthy blood cells in his body. It was an arduous process that ultimately left him with a clean bill of health. Over the next several years, his doctors monitored him closely, including performing an annual bone marrow biopsy.

Before treatment, he said, the myeloma had infiltrated 60% of his blood cells. Stem cell transplantation has reduced these levels to zero. However, after about five years, his multiple myeloma level returned to 10% and he required further treatment.

But Washington closely followed the latest research and thought he had reason for optimism. The US Food and Drug Administration (FDA) approved the former CAR T cell therapy for multiple myeloma In 2021.

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

It cited multiple reasons for the low rate of trial participation, including historical mistrust of the medical establishment and a lack of available clinical trials. “If you live in an area that is underserved or underrepresented, the hospital or community physician may not have clinical trials available, or that patient may face restrictions on accessing that site associated with the clinical trial,” she said.

Washington, a black patient, appears to have avoided this trap, benefiting both times from the latest treatments. In January, he began six weeks of chemotherapy with a three-drug combination of Vilcadi, Darzalex and dexamethasone before undergoing CAR T-cell therapy.

For this, doctors collected Washington T cells, a type of white blood cell, and genetically modified them to better recognize and destroy cancer cells before reimplanting them in his body. He did not need to be hospitalized after the transplant and could perform daily blood draws at home. His energy levels were much higher than during his 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 this point.”

Hunter also considers herself lucky despite her delayed diagnosis. After being diagnosed in January 2017, she underwent five months of immunotherapy using 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, now a co-leader of a patient advocacy and support group, said stories like Washington’s and hers provide hope despite cutbacks in research.

In the eight years since her treatment, she said, she has seen thinking about multiple myeloma — long described as a treatable but incurable disease — begin to shift as an increasing subset of patients remain disease-free for many years. She said she has been meeting people with the disease for 30 years.

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