Dear METAvivor Advocates,
Greetings from your METAvivor Advocacy team! This month, we’ve engaged in numerous advocacy efforts on your behalf, including monitoring legislative and budget developments, joining key coalitions to amplify your voice in the fight for better outcomes for the metastatic breast cancer community, and meeting with key congressional offices. Here is your May advocacy update.
President’s Budget Release
In May, the Trump administration released its fiscal year 2026 budget request. While the request doesn’t set spending levels (this must be done by Congress) it does reflect the administration’s policy and spending priorities for the coming year.
The budget proposes $27.9 billion in total program-level funding for the National Institutes of Health (NIH), representing a nearly 40% decrease from current funding. Notably, the proposal also includes a major reorganization of NIH, consolidating the existing 27 NIH institutes and centers down to eight, and eliminating funding for several entities, including the National Institute on Minority Health and Health Disparities, the Fogarty International Center, the National Center for Complementary and Integrative Health, and the National Institute for Nursing Research.
The National Cancer Institute (NCI) is one of only a few NIH institutes that remain structurally intact in the President’s request, but the requested FY26 level for NCI is $4.531 billion, a decrease of $2.693 billion.
The proposal relocates the Advanced Research Projects Agency for Health (ARPA-H), another Department of Health and Human Services entity important to medical research, to the newly created Office of the Assistant Secretary for a Healthy Future, and allocates $945 million in funding for the agency, a nearly 37% cut from current funding of $1.5 billion.
While the administration has stated that the budget prioritizes research to “end the chronic disease epidemic”—including cancer—the many proposed funding cuts and structural shifts it includes raise serious concerns about long-term support for medical innovation and the stability of our research ecosystem.
The “Big Beautiful” Bill:
On May 22, the House of Representatives passed the Trump-backed package of tax and spending cuts known as the “One Big Beautiful Bill.” The bill contains significant Medicaid cuts, including the addition of work requirements for able-bodied adults. While the bill is likely to see revisions as it moves through the Senate, as things stand, the House version would have serious implications for Medicare, Medicaid and health care coverage and access more broadly. The Congressional Budget Office (CBO) estimates that the bill would add $2.4 trillion to the deficit and leave 10.9 million more uninsured. According to CBO funding for Medicaid would be slashed by nearly $700 billion, and the food stamps program would see a cut of $267 billion in federal support.
Coalition Efforts
To push back against the proposed NIH funding cuts and advocate for a stronger federal commitment to medical research, METAvivor joined several leading coalitions this spring, including the Ad Hoc Group for Medical Research and One Voice Against Cancer (OVAC). We co-signed a letter with the Ad Hoc Group inviting NIH Director Dr. Jay Bhattacharya to meet with the research and patient advocacy community to discuss his vision for the agency and opportunities for collaboration. We also signed onto a second letter urging Congress to reject the proposed 38 percent cut to the NIH and instead invest boldly in biomedical research. The letter emphasized the life-saving impact of NIH-funded research and the importance of a transparent, public process before making structural changes to the agency. Participation in these groups allows for vital information sharing—key in this rapidly changing environment—and ensures a unified message that is amplified beyond what any one organization could do alone.
Hill Meetings
Throughout May, METAvivor also conducted a number of meetings with congressional offices to elevate key policy priorities for the MBC community. We discussed the importance of modernizing the SEER database to improve cancer surveillance and data accuracy for metastatic diagnoses. We highlighted the administrative burdens associated with the prior authorization process and advocated for reforms that would reduce delays in care for patients living with metastatic cancer. Additionally, we urged support for the Metastatic Breast Cancer Access to Care Act (H.R. 2048), which would waive the waiting periods for Medicare and Social Security Disability Insurance, and advocated for the reintroduction of the Cancer Drug Parity Act to ensure fair insurance coverage for both oral and intravenous cancer treatments. The Metastatic Breast Cancer Access to Care Act currently has 96 co-sponsors in the House of Representatives, with 73 Democrats and 23 Republicans.
As we navigate time of unprecedented unpredictability and change, we will continue to track these developments closely and advocate for the policies that matter most to the MBC community. Thank you for your ongoing support and partnership. Your voice and engagement are essential to the success of this work, and we are honored to represent you in these important policy discussions.
Sincerely,
The METAvivor Advocacy Team
