METAvivor is focused on changing the conversation around metastatic breast cancer. For the first time, we have partnered with a professional lobbying firm to help us raise awareness of MBC among Congressional officials, and to directly request that they increase funding for MBC research at the national level, and support efforts to improve access to quality healthcare and innovative therapies.
Our Legislative Advocacy plan has seven key strategic goals and a road map that identifies and targets strategies to reach those goals:
1. Expand the metastatic cancer research portfolio at the National Institutes of Health (NIH) in through growth in appropriations and demonstrated congressional interest in controlling and eliminating cancer that has already disseminated (metastasized).
This goal includes working through the annual appropriations process to secure language from Congress directing NIH to prioritize research for already disseminated (metastasized cancer).
2. Ensure the continued growth of the Breast Cancer Research Program (BCRP) within the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD), and encourage prioritization of research opportunities for already disseminated, metastatic Stage IV cancers.
This will include advocating that a category be added to CDMRP agenda specifically focused on the already disseminated metastatic cancer. Since eliminating breast cancer through prevention has failed, the focus must now be shifted to eliminating mortality for the Stage IV patient.
3. Raise awareness of already disseminated, metastatic, Stage IV cancer and the unique needs of affected individuals on Capitol Hill and among the general public.
Goal #3 includes conducting a sustained outreach and education campaign to ensure that the elected members of Congress have appropriate information about metastatic cancer and the issue facing affected constituents.
Goal #3 also includes advocating for new codes for patients with a diagnosis of already disseminated metastatic cancer so that this population can be correctly counted.
4. Support efforts to improve access to quality, affordable healthcare and innovative therapies.
Goal #4 includes participating in efforts to end the waiting period for disability benefits for individuals facing terminal illness. This can be done by advocating for the Social Security Disability Fairness Act (H.R. 5347/ S. 2010) and addressing concerns with the Medicare Part B Demonstration Project as led by the Community Oncology Alliance and to address the 2-year post-SSDI effective date start for Medicare.
5. Cultivate a nationwide network of grassroots advocates who will effectively engage their elected officials to help advance the metastatic cancer agenda.
METAvivor cannot make this happen without you.
6. Participate in community advocacy efforts focused on improving the drug development pipeline and facilitating treatment development.
7. Monitor and inform relevant legislative and public policy issues by participating in coalition advocacy activities and attending events on Capitol Hill.
Watch this space for more information about the Legislative Advocacy Plan, and to learn how you can participate in upcoming events and actions.