Actionable Steps to Address Disparities in Healthcare Among US Patients With Multiple Myeloma: A Patient Perspective

Patients with multiple myeloma (MM), patient advocates, healthcare providers (HCPs), and industry sponsors gathered at 2 MM Health Equity Summits to discuss their experiences and perspectives on MM healthcare inequities in the US. Eight topics relevant to the patient experience were identified at the first summit, prioritized by participant survey, and aligned on by the entire group. Two topics were then selected for priority discussion in the follow-up summit, which led to the insights presented here and actionable steps for US HCPs, policy makers, and other stakeholders. The first topic centered around delivering precise information specific to a patient’s disease journey, emphasizing awareness and understanding. Lack of MM awareness and its symptoms among non-specialist HCPs and patients was identified as the primary cause for delayed diagnoses in patients with generalized symptoms. Participants suggested that enhancing HCP MM trainings and resources may aid timely diagnoses. Furthermore, using diverse communication channels and leveraging support groups and community health workers may improve MM education for patients, caregivers, and other family members and promote self-advocacy. The second topic focused on improving access to optimal care. Participants discussed how geographical, cultural, and financial factors influence access to specialized treatment. Proposed solutions included telehealth, reducing potential HCP biases in referrals, and using patient navigators to aid with insurance obstacles. Participants also discussed ways to improve perceptions of clinical trials. The MM Health Equity Summits allowed patients and patient advocates to discuss experiences and treatment access barriers. Actionable steps were recommended for HCPs and policymakers to improve treatment of disadvantaged patients, redressing historic inequities, and focusing on solutions to expand awareness, understanding, and access to healthcare.