Advocacy Resources

METAVIVOR ADVOCACY FACT SHEET

Thank you for your support of METAvivor and our mission of improving benefits, increasing research funding for metastatic breast cancer. If you are reading this, you or someone you know, is living with metastatic breast cancer. Did you know that only 2% of all the money dedicated to breast cancer research goes to fund metastatic breast cancer?   Or that 30% of people diagnosed with breast cancer will unfortunately experience a metastasis? This has to change and through our advocacy we can alter these dynamics and increase the resources available for metastatic breast cancer research and support.

Our goal is to fund research to end death from metastatic breast cancer or at least make it a survivable chronic condition with a good quality of life until a cure is found.

This is where advocacy comes into play. We will do this through a combination of direct engagement with our elected officials and grassroots advocacy to make sure that our voices are heard and that we can advance our priority issues.

METAvivor’s Advocacy has already made a difference.  Thanks to the active participation of METAvivor advocates and allies we have already seen:

• An increase of federal funding of $13.9 billion for the National Institutes of Health (NIH) and an increase of federal funding of $1.69 billion for the National Cancer Institute (NCI);
• An increase of $80 million in the Defense Dept. Peer-reviewed cancer research program and $30 Million for breast cancer.
• Continued Appropriations Committee Language Recommending an update to the SEER (Surveillance, Epidemiology, and End-Results Registry) to reflect metastatic recurrence and cancer migration across the country. METAvivor has also directly funded $23 million in private grant research since its inception.

But that’s just a start! Working together we can increase funding and support even more.

Building increased advocacy capacity:

In the past, METAvivor’s advocacy work was focused around the Stage IV Stampede held every autumn in Washington DC (and in 2020 2022 held virtually). The Stampede will always remain a centerpiece of our advocacy efforts, but we are now building a year-round advocacy program to communicate with elected officials and policymakers at critical moments in the legislative process.

You can participate in METAvivor’s advocacy program in at least three important ways: as an Advocate (volunteers who help by contacting elected officials at different times), State Captain (a volunteer leader who helps recruit and communicate with Advocates), or a Mentor (a volunteer leader who helps train and support Advocates and State Captains).

Advocacy Toolkit:

Metavivor provides a rich authoritative Advocacy Toolkit to assist you in your advocacy efforts.   This “basic” Advocacy Toolbox is designed to support METAvivor Advocates as they get begin contacting policymakers. It contains background information on METAvivor, a basic advocacy fact sheet, an introduction to METAvivor’s current issue agenda and a selection of tip-sheets for contacting policymakers. METAvivor will also be developing additional tools and trainings to support our advocates over the coming months.

Thank you so much for your participation in METAvivor’s Advocacy Program.

Best Regards,

The METAvivor Advocacy Committee

[email protected]

Legislative Agenda

118^th Congress, 1^st Session

METAvivor is a national nonprofit organization dedicated to sustaining hope for those living with stage IV metastatic cancer. This terminal disease occurs when breast cancer spreads beyond the breast to other organs in the body (most often the bones, lungs, liver or brain). METAvivor’s legislative agenda will change annually based on current opportunities and past successes. The agenda is developed and approved by METAvivor’s Board of Directors. Below is a summary of key issues for the current 118th Congressional Legislative Session.  

Advance Metastatic Breast Cancer Research

• National Institute of Health: Provide the National Institutes of Health (NIH) with at least $51.9 billion in funding for Fiscal Year (FY) 2024.  
• APRA-H:   Provide the Advanced Research Projects Agency for Health (ARPA-H) with $2.5 billion for FY 2024.
• Department of Defense Funding: 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 

• Encourage timely efforts to assist the National Cancer Institute 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 systematically undercounts the impact of metastatic breast cancer.  SEER fails to reflect metastatic recurrence, thereby significantly undercounting cases of MBC.  SEER also fails to record the origin site of metastatic cancer 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 the impact of 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 Patient Care 

• Pass the bipartisan Metastatic Breast Cancer Access to Care Act (S. 663/H.R. 549).   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 ensures that many people with MBC are unable to collect the benefits that they paid into the system because of their reduced lifespan, currently averaging 33 months after diagnosis.
• Pass the bipartisan Cancer Drug Parity Act (TBD), which would prevent manipulating treatment administration to increase patient cost-sharing responsibilities. This legislation would prevent various agencies and health insurers from refusing to pay for more costly medications that doctors prescribe because they are best for their patients.  It would also 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.