The Stage IV Stampede - Ensuring that Stage IV Gets More

BY Sonya Negley


We have all espoused that “Stage IV Needs More” and certainly, it does…but what action have we taken to ensure that Stage IV Gets More?

This year, as we enter Pinktober, there will be a different message coming from METAvivor and the metastatic cancer community. The message will be one of unity and specific, measurable goals. There will be no fluff, no pink soup cans, no going braless -- only action.

Stage IV Stampede will be held on National Metastatic Breast Cancer Awareness Day, October 13 from 8:00 am – 3:30 pm in Washington DC. We will begin with a one mile march on the mall, a Die-In hosted by MET-Up, a panel to educate congressional leaders on metastatic cancer, followed by team visits with individual congressional offices. Stage IV Stampede will be the launch of a year-long (and maybe longer) legislative advocacy plan that we believe will change the landscape of Stage IV metastatic cancer. METAvivor has joined with Living Beyond Breast Cancer, the Male Breast Cancer Coalition, the Metastasis Research Society, MET UP, the Tigerlily Foundation and the Young Survival Coalition for both the event and to help move the plan forward.


METAvivor was a little fatigued from the “metastatic cancer” and “breast cancer” wordplay that has been a part of funding through most agencies. It is also very confusing to those not living with metastatic breast cancer. We know that the precious little funding that is available for metastasis research, typically goes to the prevention of metastasis, not to research focused on already disseminated metastatic cancer. METAvivor decided we couldn’t keep doing the same thing and expect a different result. We had to do something significantly different to increase research funding for Stage IV metastatic cancer on a national level. We needed a legislative plan of action, and professional guidance from an established lobbying and advocacy firm in Washington D.C. We also knew it was going to take money to advance the legislative plan. Since 100% of donations to METAvivor go to MBC research, we had to find sponsors. We set to work and were able to get critical support from corporations like Celgene, Eisai, Lilly Oncology, and Novartis. Thanks to their generous support, we have teamed with an established legislative advocacy firm to develop a detailed plan of action that is measurable and achievable. But now we need your help.

The advocacy plan includes 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 Fiscal Year (FY) 2017 & FY 2018 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) in FY 2017 and FY 2018, 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 newly-elected members of the 115th 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.

In addition to these seven, high level goals, we have developed a strategic road map to achieve each of these objectives. And the greatest part? You can become involved in this groundbreaking effort to ensure that Stage IV Gets More! How? Participate in the Stage IV Stampede in any way that you can:

  • Join METAvivor on October 3 at 10:30a.m. ET or October 6 at 3:00 p.m. ET for virtual advocacy training (please participate if you plan to meet with your congressional representatives at home or with us in Washington D.C.).
  • Ask your friends and/or family members to join the training.
  • Visit your congressional representative in your home district. Take your friends and family with you, and/or ask them to support our legislative agenda.
  • Send a letter with our seven goals to your elected representatives.
  • Come to Washington D.C. for the Stage IV Stampede on October 13 and be surrounded by others with MBC and their supporters to march, Die-In, and lobby for the cause.

Together we are stronger. Together, we will work to end death from metastatic cancer.

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