Our Legislative Priorities
METAvivor’s federal issue agenda is developed and approved by our Board of Directors, and changes annually based on current opportunities and past successes. Our advocacy efforts are focused on three key areas where policy change can make a meaningful difference for the metastatic breast cancer community.
ADVANCE RESEARCH
- Restore and maintain external communications between HHS and outside parties. Without collaboration and technology transfer of intellectual property between the agencies and third parties, research progress is interrupted. Cancelled grant evaluations and study sessions cause significant harm to research and delay the development of life-changing treatments.
- Provide the National Institutes of Health (NIH) with $51 billion in funding (a $4.1 billion increase) for Fiscal Year (FY) 2027.
- Maintain at least $1.5 billion for the Advanced Research Projects Agency for Health (ARPA-H) for FY 2027 to ensure innovative work can begin on cancer and other conditions as quickly as possible.
- Restore $150 million (+ $5 million) in funding for the Department of Defense Peer-Reviewed Breast Cancer Research Program, and continue to include “metastatic cancers” as a condition eligible for study.
Take Action
Support and Modernize Tracking of Metastatic Cancer
METAvivor urges Congress to support America’s cancer registries by providing $63.4 million for the CDC’s National Program of Cancer Registries (NPCR) to fund state and regional cancer registries nationwide and by including report language directing that funding for the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program be maintained or increased as necessary to continue nationwide cancer surveillance.
NPCR and SEER work together to collect cancer data covering nearly 100% of the U.S. population, providing critical information to researchers, clinicians, policymakers, and public health professionals.
Congress has an opportunity to modernize cancer data collection with additional investments so that registries can better capture the full trajectory of metastatic cancers, including recurrence, progression to metastatic disease, and cause-specific mortality.
Take Action
Improve Care
- The Cancer Drug Parity Act (H.R. 4101/S. 5004): The bipartisan legislation would prevent insurers from imposing higher out-of-pocket costs, deductibles, copayments, or coinsurance for oral and patient-administered cancer medications than for treatments administered in a hospital or clinic. Oral cancer treatments are an increasingly common standard of care, and many have no intravenous or injectable equivalent. Yet differences in insurance coverage can leave patients facing significantly higher costs for the treatment or unable to access the first choice of treatment that their healthcare providers recommend.
- The Metastatic Breast Cancer Access to Care Act (H.R. 2048/S.3442): This legislation would fast-track disability and federal healthcare benefits for individuals with metastatic breast cancer. Under current law, a person with metastatic breast cancer must wait five months after applying for Social Security Disability benefits to begin receiving those payments. Also, that person must wait an additional 24 months after disability benefits begin before receiving Medicare insurance coverage. This delay creates obvious hardships for people with metastatic breast cancer as they struggle to pay medical expenses. This delay also unjustly means because of their reduced lifespan (currently averaging 33 months after diagnosis) that many people with MBC are unable to collect the benefits that they paid into the system.