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As part of its goals to improve communication and strengthen METAvivor’s advocacy efforts, this is the first edition of a newsletter which seeks to cover topics of interest to the MBC community.
What topics would you like to see in future newsletters? Please address your ideas and suggestions to [email protected].
METAvivor Advocacy Committee
Barry Lenk, METAvivor Board Member and Advocacy Committee Co-Chair
Dan Cramer, Advocacy Committee Co-Chair
2020 was a challenging year for everyone, including members of the U.S. Congress. Lawmakers started the session with ambitious plans to address health funding, drug pricing, and coverage/access for those with serious illness, all of which were side-lined as legislative efforts to fully address COVID-19 took center-stage in March. The session ended as Congress hurried to pass a massive omnibus legislative package comprised of Fiscal Year (FY) 2021 appropriations, critical authorizing bills, and emergency supplemental COVID-19 response coupled with economic stimulus measures, which ultimately passed with overwhelming bipartisan support.
The November election shifted the balance of power in Washington and pushed lawmakers more towards the political middle. As the 117th Congress convenes, dozens of newly elected members are joining the ranks of the House and Senate as well. One dynamic that remains consistent though is that both parties appear eager to get back to work negotiating comprehensive legislation that addresses coverage and access issues for the patient community. Within the context of healthcare legislation, it is important to note that there is also strong interest on Capitol Hill in addressing health disparities and promoting health equity in impactful ways.
The incoming Biden/Harris-administration has indicated an intention to double-down on patient protections enacted through the Affordable Care Act (ACA) with the nomination of ACA champion Xavier Becerra as Secretary of the Department of Health and Human Services (HHS). Congress will also be considering a full range of healthcare options from the systematic to the community-specific with a Supreme Court ruling on the ACA pending.
The 117th Congress is also well-poised to continue to advance cancer research and patient care, though there are some headwinds following massive infusions of health funding related to the COVID-19 response. It is expected that President-elect Biden will feature the “Cancer Moonshot” as a key priority. Moreover, long-time cancer-research champion Rosa DeLauro (D-CT) has ascended to Chair the full House Appropriations Committee.
2021 holds a great deal of promise and opportunity for the metastatic cancer community. Today, there is both hope and uncertainty. Old Capitol Hill truths, such as the squeaky wheel gets the grease, will continue to hold sway though. In order to capitalize on any opportunities to enhance research funding, facilitate treatment development, fast-track coverage benefits, or address accessibility it will be important to reach out to legislators, use your story to empower your efforts, and educate them using your experiences. In this regard, we look forward to working with you throughout the year to create sustained, meaningful, and timely progress on advocacy issues.
During the 2020 virtual Stampede, we met with a variety of health staffers who reminded us during the Zoom calls that the budget for 2020 was already set as we talked about funding for research and asked about the line items for Metastatic Breast Cancer (MBC). While we usually have our Stampede during Breast Cancer Awareness Month (October), the discussions this year occurred a bit earlier in the year, specifically over the summer.
So, how does this timing affect the impact we have on these staffers?
First of all, the timing of any discussion with an elected official really does affect how effective those efforts can be; however, I think the best way to look at these discussions is that we are planting seeds. Every time we share our stories, crying, or otherwise demonstrating how important the topics are to each of us personally, we affect the people we are interacting with. Many of the staffers we interacted with this year and in years past are often young professionals. These young men and women often haven’t interacted with those of us living while dying, and hearing about our experiences is extremely impactful.
Secondly, understanding the position that the elected official’s office has on a particular committee is key. Several of the staffers we talked to this year are employed in an office where the elected official serves on an appropriations committee (i.e., the committee responsible for allocating the funds). Knowing that an elected official is in a key role is important when crafting the approach for the conversation.
Third and finally, the general time period applicable to appropriations is in the first quarter of the year. The staffers we spoke with indicated that a timely follow up would be in January/February, so I personally have a reminder on my calendar to check back in with each of the staffers in those key offices during that time period to remind them of the discussions and our priorities.
I heard once that it often takes a person six (6) times hearing about a topic before the listener is in the position to take action. The Stampede is an organized initiative that allows those of us who are patients for life and our allies, to have these conversations whether it’s the 1st or the 5th or the 6th time we are interacting with that staffer or elected official. Those seeds we are planting now will bear fruit and remember, timing can be so important, so follow up, follow up, follow up.
Metavivor is planning an initiative in February in connection with appropriations funding for MBC research. You will be receiving more information shortly.
Even in the best of times, less than 5% of all funds raised for breast cancer research go toward metastatic breast cancer research. But this past year, decreased donations due to the COVID epidemic have caused many organizations, including most of the major cancer organizations with large research portfolios, to substantially or completely suspend funding of cancer research. Metavivor is one of the very few nonprofits that has continued to fund metastatic breast cancer research this year.
In 2020, Metavivor announced that it was funding $4.4 million in metastatic breast cancer research grants. This was made possible because Metavivor directs 100% of all donations to research, and because of the commitment and efforts of the metastatic breast cancer community in donating either directly, through social media, or through fund raising events.
In this newsletter, you will find an article on fundraising ideas for metastatic breast cancer research. If you are interested in learning more, please email Metavivor at [email protected].
These are the MBC research grants announced by Metavivor for 2020:
METAvivor Vice President and Director of Fundraising Patrick Quinn discusses his experience running multiple fundraisers and provides practical tips for those interested in pulling off a successful fundraising event. Continue reading...
METAvivor Board member Kelly Shanahan, M.D. discusses her experiences over the years attending the San Antonio Breast Cancer Symposium (SABCS) as both an advocate and a doctor, including key takeaways from the 2020 virtual conference. Continue reading...