2025 Myeloma Policy Updates: Medicare $2,000 Cap, Parity & Medicaid Access

An informative discussion with International Myeloma Foundation (IMF) Director of Public Policy and Advocacy Danielle Doheny on U.S. policy updates, Medicare cap, drug parity, telehealth and other relevant issues involving myeloma patients and the myeloma community at large. 

At the recently concluded Patient and Family Seminar in Los Angeles, IMF Director of Public Policy and Advocacy Danielle Dohey shared the latest wins and priorities in myeloma advocacy this year: securing a Medicare $2,000 out-of-pocket cap starting in 2025, advancing the Cancer Drug Parity Act for fair insurance coverage of oral vs IV therapies, and protecting access to Medicaid and the Affordable Care Act, to name a few. 

 
The IMF Advocacy team is guided by the following policy principles: ensuring access to care; eliminating financial barriers; and advancing myeloma research. 

In 2025, the IMF Advocacy team prioritized the following: 

1. Ensuring access to care 

• Fighting delays and denials from insurance companies 
• Supporting telehealth so care is more accessible 
• Working to cap how much patients pay out-of-pocket for drugs (e.g., Medicare cap of $2,000 in 2025; estimated ~$2,100 in 2026) 

2. Eliminating financial barriers 

• Addressing high drug prices 
• Making sure oral chemo pills (like Revlimid) cost the same as IV treatments – this is part of the Cancer Drug Parity Act (progress in 44 states, pushing for a national law) 

3. Advancing myeloma research 

• Making it easier to join clinical trials, including help with travel and other barriers 
• Protecting funding for cancer and public health research 

However, challenges remain: 

• Possible cuts to Medicaid and the Affordable Care Act could make people lose their health insurance. 
• There is an ongoing need to speak up so myeloma patients keep their coverage. 

What is the role of the IMF Advocacy team? 

The U.S. IMF Advocacy team advocates for equitable access to timely diagnosis, innovative treatments and research funding on Capitol Hill and with key regulatory agencies. 

The Global IMF Advocacy team collaborates with multiple stakeholders to inform and influence decision-making on critical healthcare issues that directly impact myeloma patients.  

Both teams advocate alongside and on behalf of myeloma patients and the communities the IMF serves. Advocacy plays a critical role in educating policymakers about issues that are important to our community, to motivate them to act. 

 
How can patients and care partners get involved?  

In September 2025, the IMF Advocacy team was able to bring 20 patient advocates to Washington D.C. — coinciding with Blood Cancer Awareness Month.  

Whether you want to share your personal story, push for research funding, or fight insurance barriers like step therapy, the IMF’s Advocacy team can help you make an impact and ensure that your voice is heard in Capitol Hill and across the U.S.  

Patients and care partners can get directly involved by actively participating in the IMF Legislative Advocacy Master Class as well as email campaigns and other IMF Advocacy initiatives. 

The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.”  

The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies.  

If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected] (mailto:[email protected]). 

[You can watch the PFS-LA Advocacy Updates (https://www.myeloma.org/videos/us-policy-updates-2025-medicare-cap-drug-parity-telehealth-how-patients-can-get-involved)video in its entirety.]