Multiple myeloma research is moving at an impressive speed. New drug combinations, bispecific antibodies, CAR T-cell therapies, and precision-testing strategies have transformed a disease that once had far fewer treatment options. Unfortunately, the passenger list for this scientific rocket does not accurately reflect the people most affected by the disease.
Black Americans develop multiple myeloma at more than twice the rate of White Americans. Recent National Cancer Institute data show especially striking differences: the age-adjusted incidence rate among non-Hispanic Black men is 17.9 per 100,000, compared with 8.4 among non-Hispanic White men. Among women, the rates are 13.4 and 5.2, respectively. Yet Black patients have commonly represented only about 4% to 9% of participants in major myeloma trials. Hispanic patients, American Indian and Alaska Native patients, and some Asian American and Pacific Islander communities are also frequently underrepresented.
This imbalance is not merely an awkward demographic footnote. It affects whose experiences shape eligibility rules, whose side effects are recognized, whose treatment responses are understood, and how confidently doctors can apply trial findings in everyday care. Better minority enrollment in multiple myeloma clinical trials is therefore both a health equity priority and a basic requirement for better science.
A Disease Burden That Is Not Reflected in Research
Multiple myeloma is a cancer of plasma cells, a type of white blood cell found in bone marrow. Malignant plasma cells can crowd out healthy blood cells, weaken bones, damage the kidneys, increase infection risk, and produce abnormal proteins. The National Cancer Institute estimates that approximately 36,000 Americans will be diagnosed with myeloma in 2026 and about 10,850 will die from it. The median age at diagnosis is 69, although Black patients often develop the disease at younger ages than White patients.
Multiple myeloma is not distributed evenly across the population. Black Americans have substantially higher rates of myeloma and its precursor condition, monoclonal gammopathy of undetermined significance, commonly called MGUS. Researchers are still examining the roles of inherited ancestry, tumor biology, environmental exposure, health conditions, access to care, and socioeconomic circumstances.
The important point is that race is not a neat biological switch. It is a broad social category that may overlap with ancestry, geography, environmental exposure, economic opportunity, discrimination, and differences in medical care. Researchers should therefore avoid treating racial labels as if they were laboratory measurements. At the same time, ignoring racial and ethnic disparities would hide patterns that urgently need investigation.
The participation gap has been documented repeatedly. A review of 78 multiple myeloma trials enrolling 12,055 patients found that 84% of participants were non-Hispanic White, 8.6% were non-Hispanic Black, 2.8% were Asian, 1.8% were Hispanic, and only 0.1% were American Indian or Alaska Native. A later FDA analysis of trials supporting myeloma drug approvals from 2006 through 2019 found that 84% of participants were White, 7% Asian, 4% Black, and 4% Hispanic.
In other words, the group carrying one of the largest shares of the disease burden is often seated near the back of the research buswhen it is offered a seat at all.
Why Diverse Clinical Trial Enrollment Improves Science
More representative safety information
Clinical trials establish how a therapy should be dosed, what side effects may occur, which complications require monitoring, and which patients are most likely to benefit. When only a small number of people from a racial or ethnic group participate, researchers may not have enough data to identify meaningful differences or confidently determine that no difference exists.
Those differences may result from several factors, including genetics, disease characteristics, kidney function, other health conditions, prior therapies, nutrition, environmental exposure, medication access, and interactions with the health care system. A diverse trial does not assume that groups will respond differently. It creates enough evidence to investigate the question instead of answering it with a shrug and an asterisk.
Stronger evidence for real-world patients
Patients seen in daily oncology practice are often older and more medically complex than traditional trial populations. They may have diabetes, heart disease, reduced kidney function, mobility limitations, or previous cancers. These conditions may be more common in communities that have experienced limited access to preventive care or long-term socioeconomic disadvantage.
If a study excludes nearly everyone who resembles a typical clinic patient, the resulting data may be scientifically tidy but clinically awkward. It is a bit like testing an umbrella only on sunny days. The product may look excellent in the report, but the difficult questions remain unanswered.
In an analysis of 9,325 patients evaluated for 16 multiple myeloma trials, Black patients had a higher ineligibility rate than White patients24% compared with 17%. Requirements involving prior treatment, laboratory values, blood counts, organ function, and other medical conditions contributed to exclusions.
A fairer path to innovative therapies
Clinical trials are designed to generate evidence, not to guarantee an individual benefit. Participants may experience side effects, receive a treatment that does not work, or be assigned to a comparison group. Still, trials can provide structured monitoring and earlier access to promising therapies that are not yet widely available.
When minority patients are less likely to hear about trials, qualify for them, or reach participating centers, they may also be less likely to access innovative treatment pathways. Underrepresentation therefore affects both future scientific knowledge and present-day opportunity.
Research within more equal-access systems offers an encouraging clue. Studies have found that Black patients with myeloma can achieve outcomes comparable toand in some analyses better thanthose of White patients when diagnosis, specialists, treatment, and follow-up are similarly available. This suggests that unequal outcomes are not inevitable products of race. Access matters enormously.
Why Minority Patients Remain Underrepresented
Trials are concentrated at major academic centers
Many multiple myeloma trials operate at large medical centers located far from rural communities and underserved urban neighborhoods. Participation may require repeated examinations, blood tests, bone marrow procedures, imaging, infusions, or hospital stays.
A patient may be medically eligible yet practically unable to participate because the trial center is three hours away. Add fuel, parking, meals, lodging, childcare, missed work, and the need for a caregiver, and “free experimental treatment” can become an expensive second job with terrible commuting benefits.
The National Cancer Institute has emphasized the value of bringing research into community settings. Its Community Oncology Research Program allows patients to join studies closer to home, reducing travel and lost work while connecting local clinicians with national research networks. Minority and underserved community sites are an intentional part of that program.
Patients are not consistently asked
One of the most preventable barriers is also one of the simplest: some patients are never offered a clinical trial. Clinicians may assume that a patient will decline, cannot travel, will struggle with the protocol, lacks family support, or will distrust research.
These assumptions can become a silent eligibility test that appears nowhere in the official protocol. The appropriate approach is to explain the available options clearly, identify support needs, and allow the patient to decide.
NCI discussions of Black participation in cancer research have highlighted that underrepresented patients may be interested in trials but are often not asked. The same work notes that trial expenses, transportation, restrictive criteria, and justified mistrust created by past and present discrimination can also affect participation.
Eligibility criteria may unintentionally magnify disparities
Eligibility rules are necessary when they protect participants or help answer a specific scientific question. Problems arise when criteria are copied from older protocols without a strong current justification.
Rigid kidney-function thresholds are especially relevant in myeloma because the disease itself can damage the kidneys. Other rules may exclude patients based on stable HIV infection, previous cancers, heart conditions, laboratory values, performance status, or the exact sequence of treatments they previously received.
If those conditions are more common in a population already facing poorer health care access, a seemingly neutral rule can create an unequal enrollment outcome. The American Society of Clinical Oncology, Friends of Cancer Research, the FDA, and other groups have supported modernizing criteria so that exclusions are based on safety and scientific necessity rather than tradition.
Financial and logistical burdens are underestimated
Insurance may cover routine patient-care costs associated with an approved clinical trial, but coverage details can be confusing. Research-related procedures may be paid for by the sponsor, while travel, food, lodging, childcare, and lost wages may remain the patient’s responsibility.
These burdens do not affect everyone equally. A salaried employee with paid leave and a reliable car faces a different decision from an hourly worker who loses income whenever an appointment runs long. Patients with lower household incomes may want to participate but simply cannot make the household math work.
Navigation programs can help patients understand insurance, transportation, lodging, caregiver support, and financial assistance. NCI-supported initiatives increasingly treat these social needs as enrollment problems that research programs must help solvenot personal failures that patients should quietly overcome.
Trust cannot be demanded
Mistrust is often described as though communities simply need better brochures. The reality is more complicated. Historical research abuses, unequal treatment, dismissive communication, and ongoing discrimination have given many patients rational reasons to be cautious.
Trust grows through consistent behavior: honest explanations, meaningful informed consent, transparent discussion of risks, respect for declining participation, protection of privacy, community involvement, and evidence that researchers remain accountable after recruitment ends.
Recruitment should not begin three weeks before enrollment closes with a heroic burst of flyers. Relationships with churches, civic groups, primary care practices, patient advocates, and local oncology teams should exist long before a sponsor needs participants.
What Better Minority Enrollment Should Look Like
Set disease-specific enrollment goals
A meaningful enrollment goal should reflect who develops multiple myeloma in the intended treatment population. National census percentages alone may be misleading because the racial and ethnic distribution of myeloma differs from that of the overall population.
The FDA’s diversity action plan framework asks sponsors of certain clinical studies to establish enrollment goals, explain the rationale for those goals, and describe how they intend to recruit and retain underrepresented participants. NIH policy likewise requires the inclusion of women and racial and ethnic minority groups in NIH-funded clinical research unless a compelling scientific or safety justification supports exclusion.
Goals should be tracked while enrollment is active. Discovering the diversity problem after the final participant has finished treatment is not quality control; it is an autopsy.
Choose trial sites based on patient location
Sponsors should use disease data, community demographics, referral patterns, and local treatment capacity to select sites. Opening ten centers with prestigious addresses does little for diversity if all ten centers recruit from similar populations.
Community oncologists should be included as research partners rather than treated solely as referral pipelines. Satellite locations, partnerships with minority-serving hospitals, and shared-care arrangements can reduce travel while preserving protocol quality.
Pay the real costs of participation
Transportation assistance, lodging, meals, parking, childcare, eldercare, internet access, and compensation for time should be planned in the original trial budget. These supports must be easy to use and should not depend on patients producing a small mountain of paperwork while managing cancer treatment.
The Leukemia & Lymphoma Society has advocated for trial models that allow some care to be delivered by local providers or in the home, broaden justified eligibility, expand insurance coverage, and use culturally responsive recruitment practices.
Use decentralized and pragmatic trial methods
Some examinations, laboratory tests, symptom checks, consent discussions, and follow-up visits can be completed remotely or through qualified local providers. Medication may sometimes be shipped safely, and wearable devices or electronic questionnaires can reduce unnecessary travel.
Not every myeloma procedure can happen at home. CAR T-cell therapy, complex infusions, and emergency monitoring may require specialized facilities. A decentralized trial does not mean mailing a cell therapy between the electric bill and a pizza coupon. It means separating visits that genuinely require a major center from those that do not.
FDA oncology initiatives have recognized that pragmatic and decentralized designs may reduce participation burden, improve retention, and produce trial populations that more closely resemble routine clinical practice.
Provide culturally and linguistically appropriate communication
Consent forms should be available in the languages participants use and written in understandable language. Professional interpreters should be available throughout the study, not only when the consent form is signed.
Trial teams also need training in respectful communication and shared decision-making. Recruitment materials should explain randomization, placebos, standard care, possible benefits, foreseeable risks, privacy protections, withdrawal rights, and costs without dressing uncertainty in a lab coat and calling it certainty.
Measure every step of the enrollment pathway
Final enrollment percentages reveal only part of the problem. Trial programs should track:
- Who is screened for a study
- Who is informed about the study
- Who is referred to a trial center
- Who meets or fails eligibility requirements
- Which eligibility rules cause exclusion
- Who declines and what concerns are reported
- Who enrolls, withdraws, or becomes lost to follow-up
- Whether side effects and outcomes vary among groups
Race and ethnicity data should be reported clearly rather than hidden inside a vague “other” category. Researchers should also distinguish self-identified race and ethnicity from genetic ancestry, because they are related concepts but not interchangeable ones.
Shared Responsibility Across the Myeloma Community
Improving minority enrollment is not a task that can be handed to a single diversity officer with a cheerful slide deck. Sponsors must fund inclusive site selection and patient support. Investigators must review unnecessary eligibility restrictions. Clinicians must discuss appropriate trials consistently. Regulators and funders must require measurable plans. Insurers must cover routine care. Community organizations should help shape outreach, consent, and retention strategies.
Patients and families can ask whether a suitable trial is available, what participation requires, which costs are covered, whether care can be shared with a local doctor, and what alternatives exist. However, patients should not carry the primary responsibility for repairing a system they did not design.
Advocacy organizations such as the International Myeloma Foundation and the Leukemia & Lymphoma Society have developed education, navigation, and community-access programs. These initiatives are most useful when paired with structural changes in how trials are planned, funded, opened, and evaluated.
Experience-Based Lessons From Patients, Navigators, and Community Clinics
The following lessons reflect recurring experiences reported by patients, caregivers, trial navigators, community oncologists, and advocacy programs. They are not a claim of personal clinical experience, but they show how enrollment policies feel when translated from conference slides into actual Tuesday mornings.
The first conversation often determines everything
Patients frequently describe trial discussions as rushed, technical, or introduced too late. A doctor may mention a study during an appointment already packed with laboratory results, treatment decisions, insurance worries, and frightening new vocabulary. Even a highly motivated patient can leave remembering only that something experimental was mentioned.
Experienced navigators have learned that the conversation works better when it is divided into manageable steps. First, explain why the trial may be relevant. Next, describe the treatment and visit schedule. Then discuss known risks, unknowns, alternatives, costs, and practical support. Patients need time to speak with relatives, clergy, trusted physicians, or previous trial participants without feeling that the research team is hovering over the consent form with a stopwatch.
Logistics can defeat interest
A patient may say yes to a trial and still fail to enroll because the family has one car, the caregiver works nights, or the first appointment conflicts with dialysis, childcare, or a job orientation. Trial teams sometimes label these situations as “patient refusal,” even though the patient was willing and the system was inflexible.
Programs with stronger enrollment records tend to ask practical questions early: How will the patient travel? Who will accompany them? Can laboratory work happen locally? Is overnight lodging required? Does the employer provide leave? Is the consent form available in the patient’s preferred language? What happens if the caregiver becomes ill?
Solving those problems before enrollment is more effective than expressing surprise when the patient misses the third appointment.
Community partnerships require patience
Community leaders often report that researchers arrive with fully designed studies and ask for help recruiting participants. That is outreach, but it is not genuine partnership. A stronger model involves community representatives during protocol development, site selection, communication planning, and discussion of participant burden.
Trusted local clinicians are especially important. Patients who have known their hematologist for years may be more comfortable considering a study when that physician remains involved. Shared-care models can preserve that relationship instead of forcing patients to choose between a familiar doctor and an academic trial center.
Representation among staff changes the conversation
Patients may feel more comfortable when research teams include people who understand their language, community, cultural references, or prior experiences with the health system. This does not mean that patients will automatically trust someone who looks like them. It means that diverse teams may recognize concerns that homogeneous teams overlook and can provide a broader range of communication styles and perspectives.
Patient ambassadors who previously joined clinical trials can also make an abstract process feel more understandable. They can explain what repeated testing feels like, how randomization was discussed, what surprised their family, and which questions they wish they had asked. Their role should be educational, not promotional. A patient ambassador should never become a human advertisement who minimizes risks.
Retention matters as much as recruitment
A trial has not achieved inclusion merely because diverse patients signed consent forms. Participants must be supported through treatment, follow-up, side-effect reporting, and long-term monitoring.
Frequent check-ins, flexible scheduling, accessible transportation, translated instructions, prompt management of symptoms, and respectful communication can improve retention. When a participant withdraws, the research team should examine whether the protocol created an avoidable burden instead of quietly marking the case “discontinued” and moving on.
The most valuable lesson from community experience is straightforward: minority patients do not need to be persuaded into carrying more research burden. Research programs need to become easier to reach, easier to understand, and more worthy of trust.
Conclusion
The case for better minority enrollment in multiple myeloma clinical trials is unusually strong. Black Americans experience the disease at far higher rates yet remain underrepresented in many studies that shape new standards of care. Other racial and ethnic communities are also too often missing from the evidence base.
Closing the gap will require more than recruitment campaigns. Trials must be placed in the communities where patients receive care, eligibility rules must be scientifically justified, financial and transportation burdens must be addressed, and participation must be discussed consistently with every appropriate patient. Sponsors must establish measurable goals, publish results transparently, and remain accountable when enrollment falls short.
A clinical trial should not merely ask whether a new therapy works. It should produce enough evidence to explain for whom it works, how safely it works, and whether the people most affected by the disease were given a fair opportunity to participate. Better representation is not decorative diversity added to the final report. It is part of designing research that deserves to guide American cancer care.
