January Advocate Monthly Update
Dear METAvivor Advocates,
January marked a strong and productive start to the year for METAvivor’s federal advocacy work. With Congress and federal agencies fully operational, we advanced key legislative priorities, engaged coalition partners, and continued strengthening the foundation for METAvivor’s 2026 advocacy strategy.
Federal Funding and Policy Landscape
In mid-January, House and Senate appropriators released proposed FY 2026 funding levels for the Labor–Health and Human Services–Education (LHHS) bill. The proposal includes several important investments in cancer research and public health. The National Institutes of Health (NIH) would receive $47.216 billion, a $415 million increase over FY 2025, while the National Cancer Institute (NCI) would receive $7.352 billion, reflecting a $128 million increase. Funding for ARPA-H would remain flat at $1.5 billion.
The proposal also increases funding for CDC cancer programs by $3 million, including a $1 million funding increase for the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). While this increased investment in screening and early detection is heartening, METAvivor will continue to advocate for stronger and more targeted federal funding to address the unmet needs of those living with metastatic breast cancer, including research, data collection, and access to care.
In addition, the bill includes language limiting NIH’s use of multi-year forward funding for grants, a practice that has reduced the number of new and competitive research awards in recent years.
Both the House and the Senate must still vote on the LHHS bill before it can become law, and METAvivor will be closely monitoring the appropriations process as it moves forward.
Legislative Engagement
METAvivor’s priority legislation continues to gain bipartisan momentum. The Metastatic Breast Cancer Access to Care Act now has 197 co-sponsors in the House (149 Democrats and 48 Republicans), up from 194 earlier this month. The Senate companion bill for the Metastatic Breast Cancer Access to Care Act was introduced in December and has 3 co-sponsors. The Cancer Drug Parity Act currently has 26 House co-sponsors (22 Democrats and 4 Republicans).
We remain engaged with Representative Julie Johnson’s office on the prior authorization bill and are preparing for our conversation with the Congressional Research Service (CRS) to convene a technical discussion on the bill language.
At the same time, we are finalizing METAvivor’s 2026 legislative priorities document, which will guide our advocacy efforts throughout the year.
Agency Engagement and SEER Strategy
SEER remains a central focus of METAvivor’s agency work. We are continuing to explore how metastatic breast cancer is captured in federal data systems and identifying opportunities to improve cancer surveillance. Planned discussions with policy partners will help inform next steps related to agency engagement and potential oversight strategies.
Coalition Engagement
METAvivor will be attending the upcoming One Voice Against Cancer (OVAC) in-person meeting in Washington, DC on January 26. This engagement allows us to coordinate with partner organizations on shared priorities, particularly around NIH, NCI, and CDC funding, and to align ahead of upcoming coalition advocacy activities.
We are also actively working with the Alliance for Breast Cancer Policy to elevate concerns related to SEER and cancer registries. Through ongoing conversations with Alliance leadership and members, we are collaborating on ways to highlight gaps in how metastatic disease is tracked and to build broader awareness of the need for improved data collection and transparency.
Communications, Grassroots, and Grasstops Engagement
Our team continues to evaluate and work to strengthen METAvivor’s advocacy infrastructure. We recently held a productive conversation with partners to explore the advocacy platforms and are considering next steps, including a live demonstration for METAvivor leadership. This work is part of a broader effort to ensure METAvivor has the right tools to communicate with and support its advocates, generate outreach to policy makers, and build robust grass tops engagement.
GroundSwell and State Captain Program
Preparation for GroundSwell is well underway, with a focus on developing advocacy trainings for both advocates and state captains. These trainings are designed to ensure participants are well equipped with the tools, knowledge, and confidence needed to effectively engage in federal advocacy virtually.
At the same time, we have been reimagining the state captain program to better support and empower state captains in their leadership roles. This work includes clarifying expectations, strengthening training and resources, and building a more cohesive structure that enables state captains to engage advocates in their states more effectively.
Together, these efforts are shaping a more intentional and sustainable approach to GroundSwell, positioning METAvivor to continue building a strong, coordinated advocacy program in 2026.
Conferences and Events
Planning is underway for Living Beyond Breast Cancer’s “Thriving Together: 2026 Conference on Metastatic Breast Cancer”. We are discussing how the TFG team can support METAvivor’s tabling presence by highlighting ongoing advocacy efforts and helping connect conference attendees with opportunities to engage in policy and advocacy work focused on the needs of those with metastatic breast cancer.
Looking Ahead
In the weeks ahead, METAvivor will remain focused on monitoring Congressional action on FY 2026 appropriations, advancing discussions on prior authorization policy, continuing SEER-related strategy development, and preparing for upcoming coalition and GroundSwell activities.
Sincerely,
The METAvivor Advocacy Team