Stand up & speak out with METAvivor
Through direct engagement with elected officials and grassroots mobilization, our advocates are the voice of MBC. You can become a METAvivor Voice by working to influence funding for MBC research and legislation that can improve quality of life and care for MBC patients. You do not need to be an expert on issues or know an elected official to become a METAvivor Voice. You just need to care enough about the issues to contact your members of Congress, state legislators, or local officials and share YOUR story and experience.
Ways to get involved
Whether you are a new or seasoned advocate, there are options for being a METAvivor Voice with us.
Get Action Alerts
Sign up to get emailed legislative alerts whenever METAvivor has identified an opportunity for an impactful conversation! This could include writing to members of congress about a bill, signing a petition, or joining an advocacy campaign.
Join Stage IV Stampede
Make a powerful impact by joining other METAvivor Voice advocates on Capitol Hill for Stage IV Stampede, an advocacy event that happens each October. Training is provided for all registered participants.
Be an Advocacy Partner
As a METAvivor Voice advocacy partner you will be paired with your lawmaker to do regular outreach and serve as “the voice of MBC” for them and their staff as they consider issues and policies during legislative sessions.
Join GroundSwell
Take aligned action by joining our GroundSwell virtual advocacy campaign, which takes place every February. Register to receive event info, training session invites, and resources for advocacy.
Be a State Captain
Encourage MBC patients and loved ones in your state to participate in METAvivor Voice advocacy events. Coordinate and schedule advocacy meetings with the Senators representing your state. Learn more about becoming a State Captain.
Join Our Advocacy Committee
Support our team of volunteers in developing trainings, supporting new advocates, strategically engaging METAvivor Voice advocates, and planning and implementing actions.
Get started with an Advocacy Toolkit
Tell us what info you’d like to receive from METAvivor! When you submit your email, you’ll receive a basic advocacy toolkit so you can start exploring tips for interacting with legislators.
Why engage in grassroots advocacy?
Elected officials listen to their constituents.
This is especially true on less partisan issues like cancer. But officials only know what we care about if we tell them!
Advocacy increases our power.
The more people we get involved, the more power and influence we will have.
Our stories matter.
Elected officials are bombarded with facts and figures. When we bring a human voice to issues, policymakers better understand our stories and experiences and it is harder for them to say “no.”
Advocacy can help with fundraising.
As people get involved with advocacy and help recruit others, these new supporters increase the pool of funding and support for METAvivor’s metastatic breast cancer research grants.
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. For 2025, we are focused on moving these key issues forward in the 119th Congress.
Advance Research
- Restore and maintain external communications between HHS and outside parties—without collaboration and technology transfer of intellectual property, because 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 at least a $1.77 billion increase in funding for Fiscal Year (FY) 2025 (as proposed by the Senate).
- Provide at least $2.5 billion for the Advanced Research Projects Agency for Health (ARPA-H) for FY 2025 to ensure innovative work can begin on cancer and other conditions as quickly as possible.
- Provide a meaningful increase for the Department of Defense Peer-Reviewed Breast Cancer Research Program, and continue to include “metastatic cancers” as a condition eligible for study through the Peer-Reviewed Cancer Research Program.
Improve Tracking of Metastatic Cancer
Through appropriations and legislation, assist the National Cancer Institute (NCI) with fully modernizing the Surveillance, Epidemiology, and End-Results Registry (SEER).
- SEER was established in 1973 when much less was known about metastatic cancer and longevity after a metastatic cancer diagnosis.
- SEER’s outdated and rigid criteria means that it fails to collect data on metastatic recurrence (when early-stage cancer progresses to metastatic status). Instead its data only reflects those diagnosed with MBC de novo. As a result, the SEER Registry systematically undercounts the total number of cases of metastatic breast cancer.
- SEER also fails to record the origin site when recording metastatic cancer mortalities. For example, breast cancer that has spread to the brain, causing death, will be counted as a brain cancer mortality, ignoring and misrepresenting the root cause which is breast cancer.
By undercounting the impact of metastatic cancers, metastatic cancer is not receiving the share of research funding to which it is entitled.
Improve Care
- The Metastatic Breast Cancer Access to Care Act: 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.
- The Cancer Drug Parity Act: This legislation would require various agencies and health insurers to pay for the medications doctors prescribe because they are the best fit for their patients – even if those medications are more costly than alternatives. It would also require insurers to cover oral medicines and intravenous or injected medications equally and prevent insurers from charging different co-pays for identical treatments in different locations, such as home versus a doctor’s office, or a doctor’s office versus a hospital.
Your impact on policy
Through our annual Stage IV Stampede and GroundSwell advocacy campaigns, METAvivor’s community engagement with champions on Capitol Hill and the administration has created new opportunities. This outreach has led to:
Program Evolution
The inclusion of “metastatic cancer” in the Department of Defense Peer-Reviewed Cancer Research Program, and overall funding increases for this program and the Peer-Reviewed Breast Cancer Program
Data Modernization
The initiation of a process at NIH and the CDC to modernize the Surveillance, Epidemiology, and End Results (SEER) Registry to better capture metastatic disease and more accurately represent metastatic breast cancer patients in cancer data
Partnership on Initiatives
New collaborations and opportunities through the Cancer Moonshot and the Advanced Research Projects Agency for Health
Patient-Focused Research
Collaborative research efforts at NIH Institutes and Centers outside of NCI on priorities such as health disparities and health equity
