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Hello METAvivor supporters, friends, and advocates!
2023 is poised to be an exciting year for METAvivor advocacy. We are hoping to make significant progress on our legislative priorities (see our website www.metavivor.org for our whole legislative agenda) but we can only do that with your help! If you haven’t already done so, please sign-up to receive METAvivor Advocacy Updates and Alerts. You can sign-up at https://metavivor.org/take-action/action-alerts/
In this issue of our newsletter, you will find a legislative update and preview of the 2023 Stage IV Stampede. We are excited that this year the Stampede will be back in person AND have an online virtual component for those who can’t travel to Washington DC in October. More information on all of this will be coming this summer and we plan on offering more advocacy training this year too.
Speaking of more. Our hope for this year is to communicate more around METAvivor’s advocacy work. That means more regular advocacy alerts and updates as well as these newsletters. Thanks to everyone who responded to our April Action Alert on funding for metastatic research. Collectively we generated over 2,500 letters which is amazing and will make a difference! We are also focused on the advocacy portion of METAvivor’s web site. This will be a work in progress, but we have already tried to make it easier to sign-up and to find advocacy tools and information. More advocacy-related changes will be coming to the web-site soon so check back and let us know what you think.
Thank you for all you do as an advocate and supporter of METAvivor.
Dan Cramer,
Chair, METAvivor Advocacy Committee
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After taking a little extra time to get set up at the start of the year, the 118th Congress is already in full swing. With dozens of new members and many changes on key healthcare committees, it is timely and important for the community to establish and maintain relationships with Senate and House offices to ensure we still have our seat at the table when key funding and legislative decisions are made. Advocacy efforts throughout the year will culminate, once again, with the Stage IV Stampede in October, which will be a hybrid event featuring opportunities for in-person and virtual visits with congressional offices.
Appropriations
The administration has released a bold Fiscal Year (FY) 2024 budget request to Congress that calls for investments in medical research, patient care, and an expansion of the Cancer Moonshot and Advanced Research Projects Agency for Health (ARPA-H). METAvivor will be working with Congress to support the patient’s community’s consensus funding requests for FY 2024:
METAvivor will also be working with the advocacy community to continue to advance specific funding priorities, including:
Coverage, Access, and Out-of-Pocket Costs
Late last year, Congress took important steps to address coverage and access issues in response to community outreach. Most notably, Congress enacted limited Medicare drug price negotiation and a $2,000.00 annual patient out of pocket spending cap with a smoothing mechanism for Medicare Part D that will be phased in for 2025. Due to outreach from advocates, the Metastatic Breast Cancer Access to Care Act also saw record levels of support with over 240 bipartisan House cosponsors and 30 bipartisan Senate cosponsors. For 2023, we will be working to build support for and advance the following legislation:
METAvivor will continue to advocate for funding and access issues throughout the year with our State Captains and national volunteer grassroots advocacy network. Please consider joining our advocacy efforts and lending your voice to important efforts.
This will also be a time to connect with others working to advance the needs of the community, including legislative champions and leading medical researchers.
On October 17th, the Stage IV Stampede will return to Capitol Hill (and conduct virtual meetings throughout the second half of October) with advocates from all over the country working together to visit with their Senate and House legislators and/or healthcare aides to ask for their support on key issues. This year METAvivor advocates will be reaching out to and working with other strong advocacy groups, joining forces to push these critical pieces of legislation across the finish line. If you belong to other MBC advocacy groups, let them know that we need them, and they need us to turn the tide for MBC patients and all cancer patients nationwide.
The only way to make sure that your Representative and Senators know about metastatic breast cancer is for you to reach out and tell them. They need to hear from you so that they can understand that an increase in research funding is what you need to live longer. You are best suited to explain to them how policies they are evaluating will impact your access to care and finances.
METAvivor is known for its world-class research program but many are not aware that 100% of every donation goes toward funding METAvivor’s MBC research program along with 100% of the net proceeds from every fundraiser.
METAvivor also has other amazing programs that work hand-in-glove with research to connect patients to support groups led by fellow MBC patients, share knowledge about the latest research and provide training to enable those living with MBC to be the best advocates for themselves at a local and national level.
Since 2017, METAvivor has trained those living with MBC on critical issues that specifically affect those with an MBC diagnosis. Prior to the pandemic, patient advocates, families, caregivers and loved ones would flock to Washington DC in October to share their stories with national leaders at METAvivor’s Stage IV Stampede. During the pandemic, METAvivor built a strong grassroots network of advocates led by State Captains who shared their stories in a virtual environment. Those same advocates and more are again headed to Washington DC in October to come together again, in person to explain to our National leadership the urgency of funding more metastatic cancer research and advocating for other issues like drug parity and expedited Medicare coverage.
The most important thing is that we cannot do it without you. If you would like to stay abreast of the latest information from our Advocacy team and receive Advocacy Alerts , be sure to subscribe here.
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Tammy Bowling is a METAvivor Co-captain for the great state of New Jersey. We asked her some essential questions this month and here is how she responded!
What is the most important thing you feel you have done for MBC Advocacy?
I am proud to be the Campaign Director for #LightUpMBC because it creates a platform for people to share their stories and use their voices to educate the public about MBC. It also creates community, raises a significant amount of funding for MBC research and provides hope as landmarks around the world stand in solidarity with the Stage 4 Community.
How/why did you become a METAvivor Advocacy State Captain?
I became a State Captain for the Stage IV Stampede to use my voice to affect change. Many legislators are not familiar with MBC and don't understand the differences between early stage vs. advanced breast cancer. Hearing our stories compels them to want to do more to push through laws that will enhance the quality of life for MBC patients. Advocacy leads to education leads to change for the better!
What is the most important thing you would like people to know who are considering becoming a METAvivor Advocacy State Captain?
The only experience you need is your ability to share your story and desire to make a difference! Every person's journey with MBC is different and all our stories need to be heard.
Why do you think it is important to advocate for those living with MBC at the state and national levels?
Laws on the state level do not apply in all states. Helping a bill get approved federally will make a difference in the lives of ALL Americans affected by MBC.
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METAvivor began funding research since 2009 when a group of four metastatic breast cancer (MBC) patients and their support group rallied together to host a series of fundraisers and award the first research grant of $55,000. From that first grant in 2009, METAvivor has grown its research program to a staggering 193 metastatic breast cancer research grants totaling $28.9 million. Last year alone, METAvivor funded $5.75 million in MBC research grants to help improve current treatments and develop greatly needed therapeutic options to combat the complicated disease.
METAvivor continues to fund research and will consider this a priority until we stop losing 115 people every day to metastatic breast cancer. We have made great advances in research but there is much more to do.
Today, there are more clinical trials for MBC open now than ever before, but the finish line still remains elusive. Research and new treatment discoveries have improved progression free survival but we still have a long way to go to improve overall survival. It simply must be the priority.
What is on the horizon for MBC? New and better testing options allowing clinicians to better match treatments to patients. We can expect more inclusive clinical trials that mirror the MBC community. We can expect new, targeted treatments to emerge and of those new oral therapies to reduce patient burden.
What can you do to help? What lies between the “finish line” and our current place is research. Funding for MBC research is crucial. We have come so far but still have a long way to go. Hosting fundraisers and sharing information about METAvivor’s research program as well as participating in advocacy will insure that we can keep the pace toward the goal of transitioning the disease from terminal to survivable with a good quality of life.
