December Advocate Monthly Update
Dear METAvivor Advocates,
As December begins, we are turning our attention back to regular legislative and agency engagement following the end of the prolonged government shutdown. With federal operations reopening, Congress and federal agencies are now back to work.
Federal Funding and Policy Outlook
As the federal government is currently funded through January 30, 2026 under the existing continuing resolution, this gives Congress until the January 30 deadline to pass full-year appropriations bills to fund the government. Congress is working on an end-of-year legislative package, which includes the extension of the Affordable Care Act (ACA) premium subsidies that are set to expire at the end of this month. The Trump Administration briefly weighed a two-year extension of the tax credits ahead of Thanksgiving, but ongoing political and legislative hurdles make near-term action uncertain. This is critical for ensuring affordable coverage for many individuals with MBC. Discussions continue in both chambers about potential paths forward, though no consensus has emerged.
The Senate has also confirmed several key leaders at the U.S. Department of Health and Human Services, including new assistant secretaries overseeing health, family support, and financial resources, as well as a new HHS general counsel. Alicia Jackson has been confirmed as the director of ARPA-H, providing full leadership for the agency as it continues to build out its research agenda.
Agency Updates
At the agency level, NCI and CDC have begun implementing changes to how cancer registries classify patient demographic information. Beginning in 2026, all registries funded by the two agencies will be required to categorize patients only as male, female, or not stated/unknown, and federal health agencies will only receive data using these classifications. We are monitoring what these changes may mean for cancer surveillance, accuracy, and the quality of future data, particularly as it relates to metastatic breast cancer.
Legislative Engagement
Even with the challenges posed by the shutdown, METAvivor’s priority legislation continues to gain bipartisan support. As of December 2:
- Metastatic Breast Cancer Access to Care Act (H.R. 2048) has 187 co-sponsors (142 Democrats, 45 Republicans).
- Cancer Drug Parity Act (H.R. 4101) remains at 24 co-sponsors (20 Democrats, 4 Republicans).
- We continue working closely with Representative Julie Johnson’s office on the prior authorization legislation. Her team has shared feedback from the Congressional Research Service (CRS) regarding the proposal they received.
SEER Strategy
On the SEER strategy, we have drafted and circulated initial ideas for review, outlining opportunities for improving the federal government’s ability to track metastatic disease. We are considering the possibility of working with targeted Congressional offices on a letter to the Government Accountability Office (GAO) requesting that the GAO examine whether the SEER Program at NCI and the NPCR at CDC adequately capture incidence and prevalence of MBC. We are also exploring whether metastatic breast cancer could be added to NIH’s Research, Condition, and Disease Categorization (RCDC) system and represented more clearly in NIH Categorical Spending Reports. Now that agencies are back to normal operations, we anticipate reconnecting with NIH/NCI to refine these ideas and better understand procedural pathways for advancing them.
Coalition Engagement
The Alliance for Breast Cancer Policy (ABCP) recently held a steering committee meeting, during which members discussed opportunities to elevate metastatic breast cancer issues in the coming year. ABCP will also host a networking reception on December 9 during the San Antonio Breast Cancer Symposium, offering a valuable opportunity to connect with members, industry partners, and stakeholders.
Communications, Grassroots, and Grasstops Engagement
Our team continues reviewing METAvivor’s communication and advocacy infrastructure with a focus on improving coordination, reducing duplicative processes, and ensuring key information is consistently shared across systems. We are working to resolve access issues with Action Network and exploring whether the platform can be optimized for METAvivor’s needs. In parallel, we are speaking with partner organizations who use systems like Quorum and VoterVoice to understand the strengths and limitations of each. Conversations with Quorum staff are pending, and we continue trying to identify organizations of a similar size that use Action Network in order to gather more targeted insights.
GroundSwell Planning
GroundSwell planning is fully underway. We are confirming which state captains served last year and working to merge and deduplicate lists from the web form, registration records, and past volunteer rosters. Once this is complete, the next step will be outreach to identify individuals who can fill state vacancies. Registration continues to move forward, and we are beginning to shape the content and structure of the virtual training series that will take place ahead of GroundSwell.
Looking Ahead
In the final weeks of 2025, the advocacy team will stay focused on providing feedback for the prior authorization legislation, refining the SEER strategy, and preparing for GroundSwell.
Sincerely,
The METAvivor Advocacy Team