IMF Director of Public Policy & Advocacy Danielle Doheny breaks down barriers to care and the reasons why the International Myeloma Foundation’s (IMF) Advocacy Team is actively working to ensure timely, affordable, and equitable access for all patients. 
 

By Danielle Doheny  
IMF Director of Public Policy & Advocacy 

Extraordinary advances in the treatment of myeloma have been made in the past decade. Yet many patients with myeloma continue to face persistent barriers that shape their care long before clinical decisions are made. We invite YOU to share your experiences with the IMF Advocacy Team as we work to ensure timely, affordable, and equitable access to care. 

Barrier 1: Access to specialists and comprehensive care 

Myeloma is a complex disease. Treatment outcomes are often better for patients who see a myeloma specialist, but access to a specialist is far from guaranteed. Patients may face insurance networks that restrict access or may need to travel long distances for care. This can be overwhelming for older patients, those living in rural areas, or individuals managing multiple health conditions. 

Access to myeloma specialists, whether in person or virtually, remains a foundational issue. Telehealth is helping some patients consult with specialists online without extensive travel. 

However, telehealth access remains uneven, and ongoing policy discussions will determine whether it will continue to be available and affordable for patients who rely on it. The IMF is a leader in shaping these policies, and we are working to ensure that legislators understand the importance of patient access to a specialist. 

Barrier 2: Insurance design, cost-sharing, oral parity 

Effective treatment of myeloma might not be affordable even for patients with insurance, who are faced with high cost-sharing that can quickly escalate to thousands of dollars out-of-pocket. 

Financial burdens affect a patient’s daily life and, for some, may determine whether they can stay on treatment. 

Intravenous treatments are usually covered under an insurance plan’s medical benefit. Oral therapies often fall under the pharmacy benefit, where deductibles and coinsurance can be substantially higher. However, oral therapies are just as essential – and are often the standard of care – for many cancers, including myeloma.  

The IMF has a long history of leading federal efforts to address this barrier, advocating for oral parity laws and the Cancer Drug Parity Act to ensure that oral and infused treatments are covered equitably. 

While progress has been made, inconsistencies remain, leaving many patients exposed to high costs that are unrelated to their medical needs. When coverage decisions shape treatment choices, patients bear the consequences, not just financially, but in their quality of care.  

The IMF supports policies like the Safe Step Act and has trained many patients who are experiencing this barrier to share their stories effectively with lawmakers. 

Barrier 3: Utilization management and delays in care 

Utilization management aims to control costs but is frequently applied without adequate consideration of complex cancers like myeloma.  

Requirements for prior authorization, step therapy, and non-medical switching can disrupt or delay care. Such hurdles can force patients to wait for approval, repeat therapies that are no longer appropriate, or switch medications for non-clinical reasons. 

Myeloma therapies often require timely adjustments based on response to treatment, disease progression, or side effects. 

Delays can worsen treatment outcomes and erode trust between patients and their care teams. Advocacy is critical to ensuring that policies include transparency, appropriate safeguards, and expedited processes for serious and life-threatening conditions. 

Why advocacy still matters 

Advocacy is vital to ensuring that patients can access the care they need. Advances in myeloma therapies should reach every patient who needs them, when they need them, and without unnecessary hardship.  

Progress requires continued attention, engagement, and action. The IMF is working to remove all barriers to care, and we need YOU to join us. 

Patients like YOU are stepping forward to be trained and equipped by the IMF to become grassroots advocates who can help shape policy by sharing their personal stories with lawmakers. 

The more stories the IMF can amplify, the more powerful our community’s collective voice becomes. 

Reach out to us at [email protected] (mailto:[email protected]), visit advocacy.myeloma.org to learn more about our activities and how we support our advocates, and subscribe to the IMF Advocacy Newsletter at [email protected] (mailto:[email protected]). 

(This article was published in the Winter 2026 edition of Myeloma Today (https://www.myeloma.org/resource-library/myeloma-today-winter-2026) — the IMF's quarterly publication of  myeloma research.)