September 2021



In our last newsletter issue, we presented all of the research projects that Metavivor had funded through December 2020.  In future newsletter issues, we will provide an in depth focus of a particular Metavivor-funded research project.

As part of Metavivor’s Sea to Sea Project, Board Member Kelly Shanahan, M.D. will interview these medical researchers.  In this issue, she interviews Dr. William Schiemann, Professor and Co-Director of the Breast Cancer Program of the Case Comprehensive Cancer Center, Case Western Reserve University.  You can watch below, or visit the METAvivor YouTube Channel to see more. 


METAvivor Advocacy - Legislative Update

Consistent with tradition, Congress spent the first half of 2021 focused on the Fiscal Year (FY) 2022 appropriations bills. This process is shaping up with the new administration and Congress calling for meaningful funding increases for medical research and public health programs. Most notably, there is an active effort to launch and fund a new $6.5 billion research initiative called ARPA-H, which looks to be an extension of the Cancer Moonshot. 

With the summer congressional recess approaching, lawmakers have begun shifting their focus to health policy and healthcare legislation. When COVID hit, it derailed progress on a number of healthcare bills and left Congress with a to-do list for the 117th Congress that include, drug pricing reform, Medicare (and Medicare Part D) reform, and potential improvements to the Affordable Care Act to enhance coverage and access for individuals with rare, chronic, and life-threatening medical conditions. 

As Congress looks at broad changes to healthcare policy, there will be general opportunities for progress as well as meaningful opportunities to advance specific legislative priorities, such as the Cancer Drug Parity Act and the Metastatic Breast Cancer Access to Care Act. Both of these bills were popular in the last Congress, but they will need strong bipartisan support again to be passed during the 117th Congress. In this regard, the Metastatic Breast Cancer Access to Care Act was recently reintroduced as S.1312 in the Senate and H.R. 3183 in the House. 

At this time, it will be important to educate members of Congress about your healthcare experiences and coverage and access needs so they have this information as they make broad decisions. Moreover, it will also be important to advocate for specific bills to ensure they are similarly advanced as Congress works on broad legislation. Right now, we can share our stories and advocate for S. 1312/ H.R. 3183. In the near future, we will be able to reinforce our stories when we advocate for the reintroduced Cancer Drug Parity Act. 

Action Alert

Metastatic cancer patients who seek disability and Medicare coverage must currently endure up to a five month waiting period for Social Security Disability Insurance and potentially another twenty-four month waiting period for Medicare health coverage. These waiting periods and their draconian requirements can create situations that jeopardize health and disrupt physician-directed care. The current healthcare safety net system needs to be modernized to better fit the needs of individuals with serious illness that require continuous care as they transfer on to federal programs. 

In order to update and improve this system, Senator Chris Murphy (D-CT) and Senator Joni Ernst (R-IA) introduced the Metastatic Breast Cancer Access to Care Act as S. 1312 in the Senate while Congresswoman Kathy Castor (D-FL) and Congressman John Katko (R-NY) introduced a companion bill, H.R. 3183, in the House. At this time, the House bill has 53 bipartisan cosponsors while the Senate bill has 9 bipartisan cosponsors. This is a good start, but more support is needed to pass the bill. 

Reach out to your Representative and Senators, tell your story, and ask them to cosponsor and pass this bill. 

Dear ________,

My name is _________ and I am a constituent from _______. I write today as an advocate for the community of individuals impacted by metastatic cancer to ask that you please cosponsor and otherwise work to support the Metastatic Breast Cancer Access to Care Act (S. 1312/ H.R. 3183). 

Briefly discuss your healthcare journey

Thank you for your time and for your consideration of this request. As you and your colleagues work on healthcare legislation for the year, please advance this bill while also working to improve coverage and access for individuals with serious, complex, and costly illnesses. 


(Your Name) 



This year Metavivor’s signature advocacy event the Stage IV Stampede will be held virtually during the entire month of October. You can sign up here and keep an eye on your inbox for more information.



State Captains play a vital role in Metavivor’s Advocacy Campaigns.  This year, Metavivor plans three campaigns.  The first, which was held recently, is to increase Federal Appropriations for metastatic breast cancer research.  The second campaign, which is beginning now (see Advocacy Update elsewhere in this newsletter) involves Congressional Committee consideration of the Metastatic breast Cancer Access to Care Act, which eliminates waiting periods for Social Seccurity Disability and Medicare Benefits for people diagnosed with Metastatic Breast Cancer.  A second part of this campaign, after the bills are introduced, will involve advocacy for the Cancer Drug Parity Act, which prevents insurance company manipulation of out-of-pocket expenses for similar treatments.  Our third campaign is METAvivor’s annual legislative “Stampede” in October, when we urge our representatives to actually vote for approval of the research funding and to pass the legislation that we promoted earlier in the year.  In addition, Metavivor advocates wherever possible legislative initiatives at the state and local level to support cancer patients in those locales.

State Captains organize and act as a resource for advocacy efforts in each state.  To date, Metavivor has State Captains in 34 states.  The sixteen states without state captains are:

New Mexico
North Dakota
South Dakota

In addition, Metavivor does not have a State Captain in the District of Columbia.

Metavivor provides guidance for State Captains, and matches new State Captains with more experienced ones.  If you are interested in becoming a State Captain in states where Metavivor does not have a captain, or if you would like to become a co-captain in states where a captain already exists, please contact [email protected].

Barry Lenk, Director of Advocacy

METAvivor Vice President and Director of Fundraising Patrick Quinn discusses his tips for hosting virtual fundraisers. From Facebook fundraisers to larger events, Patrick provides insight and recommendations for anyone looking to host a fundraiser online.  Read more... 

Linda Hassen, METAvivor volunteer and Stage IV Stampede State Captain for Wisconsin, discusses her story and how she found a new passion for advocacy and helping others dealing with this terrible disease. Read more...