Understanding multiple myeloma health inequities

Multiple myeloma (MM), a cancer that occurs in bone marrow, involves white blood cells that ordinarily help the body fight off infection and disease. The overgrowth of cancerous versions of these cells can lead to a range of health issues, including lowered blood cell counts, bone damage, and impaired kidney function.

MM makes up a small proportion of overall cancers, with approximately 35,000 new cases reported in the United States each year.

Although MM is rare among cancers, it’s less rare among Black people in the United States. African American people have twice the risk of developing multiple myeloma compared to white people, and about 2 percent of all cancers in Black people are multiple myeloma, compared to 1 percent in white people. While African Americans make up about 14 percent of the U.S. population, they comprise roughly 20 percent of all MM patients.

Research has suggested that, based on the genetic profile of MM, Black patients should have better outcomes than other populations. And when Black patients do receive equal access to care for MM, they may have comparable or even better survival rates than white patients.

But in reality, Black people with multiple myeloma have twice the mortality rate as white people with the condition. And while survival rates for multiple myeloma patients have generally improved in recent years, thanks in large part to treatment advances, those improvements have not been experienced equally among Black patients.

Researchers have been seeking to understand why Black people are more likely to get MM and die from it in disproportionate numbers. Here’s what is known about these disparities—and what can be done about them.

Why does MM occur more often in Black people?

It’s not completely clear why multiple myeloma is more common in Black people than in white people, but researchers have discovered several contributing factors. For one, Black people are more likely than white people to have a condition that increases the risk of multiple myeloma.

The condition is called monoclonal gammopathy of undetermined significance (MGUS).

MGUS occurs when blood contains an atypical protein called M protein. This protein is formed inside bone marrow. MGUS usually produces no outward symptoms or health problems, and it is typically detected during routine blood testing or screening for other conditions. But in rare cases, the buildup of protein in the blood can damage the kidneys, heart, nerves, or immune system, with physical symptoms that may include weakness, numbness, tingling, or pain in the hands and feet.

While the cause of MGUS is not known, exposure to radiation and toxic chemicals such as pesticides and insecticides may be a factor. Military personnel who were involved in spraying the herbicide Agent Orange during the Vietnam War, for example, have more than double the risk of developing MGUS.

An estimated 20 percent of people with MGUS develop multiple myeloma, and almost all multiple myeloma patients have MGUS. There are also different types of MGUS, and the type more likely to lead to multiple myeloma is more common in Black people.

Many people with MGUS never develop multiple myeloma, however, so it cannot completely explain the higher rates of MM in Black people. Environmental factors may play a role. For example, exposure to the chemical benzene has long been linked to the development of multiple myeloma and research has shown that Americans of color on average experience greater exposure to benzene as a result of living close to facilities that refine oil and gas.

Obesity may also play a role in multiple myeloma development and outcomes. Some research has shown that increased body mass index (BMI) and obesity may be involved in both the development of MGUS and multiple myeloma. In Black patients specifically, research has suggested that increases in BMI are linked to elevated levels of MM mortality. The connection between obesity and MM needs to be explored further, as there is some conflicting research, but it is known that Black people have higher rates of obesity than any other group in the U.S.

Why are multiple myeloma outcomes worse for Black people?

While overall survival rates for multiple myeloma have improved in recent years, the increases have not been as great for Black patients. Many factors may contribute to this disparity, including several involving health services:

Lack of access to health care

Throughout the U.S. healthcare system, there is a shortage of healthcare providers (HCPs) who have familiarity with Black economic, social, and health conditions. With fewer HCPs available to provide preventive care or to offer screening services for diseases like MM—and less access to HCPs who specialize in rare cancers like MM—some Black patients may not be able to have regular checkups and may only see providers when health conditions become severe. This can contribute to cancers being detected later in Black people.

Less access to health insurance

Fewer Black patients than white patients have private health insurance, by a margin of 55 percent to 73 percent. When they do have insurance, Black Americans are also more likely to have public insurance (like Medicaid or Medicare) compared to white Americans, by a margin of 30 percent to 18 percent. What’s more, 15 percent of Black Americans have no insurance at all, compared to 9 percent of white Americans.

Lack of comprehensive health insurance may directly affect the quality of treatments that patients receive, as well as their ability to pay for treatment and their likelihood to be referred to the HCPs who can provide essential treatment. Research has shown that non-white recipients of public insurance who have multiple myeloma are significantly less likely to be treated with newer, more effective therapies compared to non-white patients who have private insurance.

Reduced access to treatments

Black patients tend to have less access to and less use of newer treatments for MM such as proteasome inhibitors (PIs), immunomodulatory drugs (IMiDs), and autologous stem cell transplantation (ASCT), compared to white patients.

The Multiple Myeloma Research Foundation reports that Black patients are 50 percent less likely to receive ASCT as white patients and are also less likely to receive standard treatments for MM. A 2017 study published in Cancer found that Black patients were 37 percent less likely to receive ASCT and 21 percent less likely to use bortezomib, a standard drug used in the treatment of MM. The authors found that underuse of these treatments was linked to a 12 percent increased risk of death among Black patients.

When they do have access to treatments like ASCT, Black patients often wait longer to receive them. In one 2019 study published in Blood Advances, Black patients had to wait an average of 5.2 months from diagnosis of MM to the start of ASCT therapy, compared to 2.7 months for white patients. (After receiving such a transplant, survival rates were similar, regardless of race.) In a 2021 study published in Clinical Lymphoma Myeloma and Leukemia, it took Black patients on average more than a month and a half longer than white patients to go from diagnosis to the start of ASCT cell collection.

Limited participation in clinical trials

Research has shown that Black patients are underrepresented in cancer clinical trials by as much as half, relative to the general population, with even lower participation in clinical trials specifically designed to test MM treatments. While Black patients account for about 20 percent of U.S. patients with MM, they make up less than 5 percent of patients enrolled in clinical trials of drugs developed to treat MM. That underrepresentation often starts with the selection of patients.

What can be done to improve outcomes

The good news is that MM may be less aggressive in Black patients, and when Black patients do receive timely and appropriate treatment for MM, their outcomes are similar or even better than those of other groups.

But more effort is needed to achieve equity in health outcomes for MM. The first step is to simply recognize that health disparities exist and to state their origins.

In a 2021 statement on issues in hematology research, practice, and training, the American Society of Hematology explained:

Many of the inequities in healthcare are linked: a lack of research into certain diseases or certain populations in society leads to a lack of treatment options. Moreover, a lack of cultural competence training and education for healthcare providers, as well as a lack of diversity among healthcare professionals, leads to a lack of understanding when treating patients from diverse backgrounds or with certain diseases. Much of this inequity stems from the racism and bias that are embedded in every aspect of our culture.

Researchers from the American Cancer Society expressed it similarly in a 2023 review of cancer statistics published in CA: A Cancer Journal for Clinicians:

Racial disparities in cancer occurrence and outcomes are largely the result of longstanding inequalities in wealth that lead to differences in both risk factor exposures and access to equitable cancer prevention, early detection, and treatment. Ultimately, disproportionate wealth stems from hundreds of years of structural racism, including segregationist and discriminatory policies in criminal justice, housing, education, and employment that have altered the balance of prosperity, security, and other social determinants of health.

Other steps to include outcomes may include the following:

Expand access to health insurance

Making high-quality health insurance more accessible and affordable enables patients to have greater access to life-saving treatments.

Reduce barriers to treatment

The authors of the 2017 Cancer study noted that treatment disparities in MM patients may stem from several causes. Structural barriers in the healthcare system likely contribute. These barriers may include cultural barriers between patients and HPCs, a lack of coordination of care among a patient’s HCPs, or conscious or unconscious bias on the part of HCPs.

There is also deep-seated mistrust of the medical community among many Black people based on past injustices and a documented history of medical experimentation on Black people. This may contribute to higher rates of black patients not seeking treatment and receiving inferior treatment.

Understand and identify symptoms

Like many blood cancers, the symptoms of MM are often subtle and may be confused with those of other conditions or even with the general aging process. These symptoms include back pain, fatigue, weakness, frequent urination, constipation, and unintentional weight loss. Understanding these symptoms can help patients and HCPs flag MM earlier and prescribe necessary blood and urine tests to patients who are at higher risk for MM.

One routine blood test can detect MGUS, and identifying MGUS early can help HCPs monitor patients for possible development of MM. From there, HCPs need to be provided with the information they need to accurately measure differing risk levels of patients and to seek appropriate treatments.

Maintain healthy lifestyles

Much of the risk of MM is genetic and outside of one’s control, but some factors are manageable. Obesity is one such risk factor that can be controlled, so it’s important to try to manage one’s weight as much as possible.

This starts with working with patients on developing regular exercise programs they can follow, based on work and life schedules and access to safe spaces for physical activity. The standard recommendation is to get at least 150 minutes of moderate-intensity exercise each week, such as walking, bicycling, or swimming. But any amount of movement added to one’s daily routine, including shorter walks or additional trips up and down stairs, can help.

Diet is a key component of weight management. Deemphasizing foods high in sugar, refined carbohydrates, and saturated fat is a start, along with prioritizing high-fiber foods like fruits and vegetables and whole grains and lean sources of protein. Many communities throughout the U.S. don’t have ready to access to fresh produce, but low-sodium, non-perishable canned beans and frozen vegetables can often supply necessary nutrients.

Expand populations in clinical trials

Black people often face logistical obstacles to broad participation in clinical trials. Few research centers are located near Black communities, for example, which means patients may have to travel long distances for treatment. Mistrust of the medical community may also dissuade Black patients from participating.

To learn more about multiple myeloma in Black patients—and to help resolve many of the inequities in disease outcomes—the sponsors of clinical trials need to work to include more Black patients in studies testing new treatments for multiple myeloma and other conditions. Researchers can also lower some of the logistical hurdles to participating in studies, such as by setting up study centers closer to Black communities and facilitating transit to and from studies.