Rural Barriers to Myeloma Care
Patients need access to expert care regardless of where they live
By Danielle Doheny, IMF Director, Public Policy & Advocacy
When my father was diagnosed with myeloma, our family quickly learned that one of the most important factors in his care had nothing to do with a specific medication or treatment plan. It was access.
Access to care
My father lives in rural Pennsylvania. To receive care from a myeloma specialist, he travels to Pittsburgh for appointments and treatment. Over the years, those trips have become part of his routine, but they have also highlighted a reality faced by many people living with myeloma: where you live can have a significant impact on your healthcare experience.
Myeloma is a complex disease. Patients benefit from receiving highly specialized care. Myeloma specialists offer experience and expertise, which is particularly valuable when exploring newer therapies and making treatment decisions, or considering participation in a clinical trial. But for patients who live in rural communities, a myeloma specialist may be hours or even a plane ride away.
The burden of distance
The burden of distance to care extends far beyond time on the road. Travel often means additional expenses for transportation, lodging, meals, and parking. Patients and their care partners may need to take time off work and be away from family responsibilities and daily routines. Frequent appointments can add physical and emotional strain during an already challenging time.
As treatments for myeloma continue to improve, access challenges can become even more pronounced. Advanced therapies such as stem cell transplantation or CAR T-cell therapy are typically available only at specialized treatment centers. Clinical trials usually take place at larger academic medical centers. Patients may need to travel significant distances, stay near treatment facilities for extended periods, or coordinate care across multiple providers and locations.
My family’s experience navigating my father’s care taught us an important lesson: access to care is about more than whether a treatment exists. It is also about whether patients can realistically reach the expertise, clinical trials, and innovative therapies that may improve their lives. Fortunately, efforts are underway to help close these gaps.
Telehealth and collaboration
Telehealth has improved the opportunities for patients to connect with specialists without the burden of travel. In addition, academic medical centers with myeloma specialists are increasingly working with community oncology practices to coordinate care. This makes it possible for many patients to receive portions of their treatment closer to home while still benefiting from myeloma specialist expertise.
Researchers, healthcare providers, patient advocacy organizations, and policymakers are exploring ways to improve access to clinical trials and reduce barriers that can prevent patients from receiving the care they need. Proposed policies such as the Clinical Treatment Modernization Act would make clinical trial participation more accessible. Allowing sponsors to pro vide patient support for related expenses such as travel, lodging, and meals would keep clinical trials within reach.
Similarly, efforts to modernize federal anti-kickback regulations could provide additional clarity around assistance programs. These programs are designed to help patients overcome transportation and other access-related barriers to care. These efforts have the potential to make it easier for patients to access specialized expertise, innovative therapies, and clinical research opportunities regardless of where they live.
Innovation
While tremendous progress has been made in myeloma treatment, innovation alone is not enough. Patients must have access to these advances. As someone who works in patient advocacy and has watched my own family navigate the challenges of receiving specialized care far from home, I have seen firsthand how geography can influence the patient experience.
A call to action
Every person living with myeloma deserves access to high-quality care, regardless of where they live. Ensuring that access to care extends beyond a patient’s zip code remains an important goal for the entire myeloma community.
Together with our dedicated team of myeloma advocates, the IMF is continuing to address barriers to specialized care and treatment. We must help ensure that advances in myeloma research provide meaningful improvements for all patients with myeloma and their families.
If you are interested in becoming a myeloma advocate, the IMF Advocacy Master Class might be right for you. This training program is designed to equip patients and care partners with the tools and the confidence needed to engage in advocacy. No prior experience is needed, only a willingness to drive meaningful change.
Reach out to us at [email protected] and go to advocacy.myeloma.org to learn more about our activities and how we support our myeloma advocates. Visit subscribe.myeloma.org to sign up to receive the IMF Advocacy Newsletter.
(This article was originally published in the 2026 Summer Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)