How Learning from Patient Experiences Can Help Reduce Disparities in Multiple Myeloma Care

Navigating a multiple myeloma diagnosis involves learning about new treatments, managing side effects, and building a strong partnership with your oncology care team. However, a patient's background can sometimes shape how they experience medical care.

To better understand these experiences, the HealthTree Foundation conducted the Disparities in Myeloma Care Survey, gathering real-world insights from 638 people living with multiple myeloma. The findings offer a clearer look at how race, ethnicity, and gender influence patient interactions, trust in the healthcare system, and access to treatment options.

Highlighting and addressing health disparities helps people receive optimal, compassionate, and personalized care

Representation matters: Black people have approximately twice the risk of developing multiple myeloma compared to White people. But they remain systematically underrepresented in clinical trials. Addressing disparities helps research and clinical trials reflect the real patient population. At HealthTree, we have a program dedicated to Black Myeloma Health, with experienced advocates and coaches that speak up against health disparities and care gaps.

Feeling unheard or dismissed by a care team creates friction that can prevent patients from asking questions, reporting new symptoms, or adhering to complex care plans. Ensuring equal respect for all backgrounds establishes the trust required for shared decision-making.

Multiple myeloma care is rapidly advancing with new therapies and clinical trials. Uncovering systemic barriers ensures that geographic, financial, or institutional obstacles do not prevent any patient from accessing life-saving care.

What did we learn from the patient survey on disparities?

The HealthTree Foundation survey evaluated patient-reported experiences across several key areas of healthcare delivery. For example, if they felt their needs were addressed or dismissed, if their race had something to do with the treatment options their care team offered, and if they trusted new treatment advances. 

Feeling dismissed by healthcare providers 

Minority patients were nearly 5 times more likely to report feeling dismissed or unheard by their healthcare provider due to their race, ethnicity, or background compared to White non-Hispanic patients (10.3% vs. 2.2%).

Among minority patients, 35.5% felt their race or ethnicity may have influenced the treatment options presented to them, compared to 6% of White non-Hispanic patients, a nearly 6-fold difference. When asked about how much trust they had in the equal access healthcare system provided to new cancer treatments, 22.8% respondents reported lower trust, for all racial and ethnic groups compared to White non-Hispanic respondents which were only 16.8%.

Disparities haven’t changed much over the years

The survey looked at patients diagnosed before 2020 versus those diagnosed in 2020 or later. Among minority respondents diagnosed after 2020, 39.1% felt race influenced their treatment options, and 18.2% felt dismissed by providers, showing that these friction points remain active in modern oncology care.

Although results can be discouraging given the perceived gap patients experience throughout their care, remember that patients are not powerless towards these gaps. Patient voice matters, advocacy matters and speaking up, addressing needs and taking an active role in your care can help reduce these disparities and experiences in the healthcare system.

What can a patient or caregiver do to address disparities?

When navigating healthcare disparities there are some strategies to help you feel confident and supported:

1. Seek a second opinion or specialist: Multiple myeloma is a complex disease, and working with a professional that you are comfortable with can make the difference in your overall experience, and sometimes also the outcomes. Consulting with a dedicated multiple myeloma specialist, especially at a specialized cancer center, can provide access to the latest clinical trials and modern care protocols.

2. Ask a trusted person to come with you to your appointments: Having a family member, friend, or caregiver present can help take notes, ensure all questions are answered, and support you during discussions with your doctor.

3. Use the "Teach-Back" strategy: Summarize treatment steps or medication instructions back to your doctor in your own words to confirm that you and your care team are completely aligned.

4. Connect with support networks: Joining patient support groups or peer-mentorship networks through organizations like HealthTree helps you share experiences, learn navigation tips, and build confidence.