Policy and the Power of Patient Advocacy
It does not take long after a diagnosis of MBC to see that policies and legislation have a tremendous impact on our lives and the resources that are available to us as we navigate this complex world. In this episode we explore policy and legislation from the perspective of the patient advocate who make it their mission to cause change. These incredible individuals help break it all down for us . Joining us are patient advocates Abigail Johnston, Kelli Davis, and Shirley Mertz. They share their experiences with MBC and how they became involved in advocacy. We also hear from leading policy experts who have done outstanding lobbying over the years, Deb Collyer of Patient Advocates In Research, also known as PAIR, Molly Guthrie from Komen Center for Public Policy, Barry Lenk from Metavivor, Ivis Sampayo of SHARE Cancer Support, and Fran Visco of the National Breast Cancer Coalition. Here are some great stories about the power of advocacy.
MENTIONED IN THIS EPISODE
Metastatic Breast Cancer Access to Care Act - NBCC Legislative Priority #2
MBCN: History of Metastatic Breast Cancer Day – October 13
Metavivor - Take Action Campaigns and home of the Stage IV Stampede
Northwest Arkansas Metsquerade - Kelli M. Davis and Lisa Cooper Quinn’s fundraiser for Metavivor.
DOD CDMRP BCRP: Breast Cancer Research Program - Listen to our podcast with Dr. Gayle Vaday here.
Surveillance, Epidemiology, and End Results (SEER)
Breast Cancer Recurrence Project - Pilot project to track breast cancer recurrences
Improving Social Determinants of Health Act of 2021 - H.R. 379 and S.R. 104
Meet the Guests of this Episode
Writer profile with Advanced Breast Cancer
Covid 19 and Metastatic Breast Cancer podcast from Breastcancer.org
No one should face MBC alone.
Whether you have a diagnosis yourself, or you're a friend, family member or caregiver of someone with a diagnosis, we're here to lend support, give information, share experiences, and to lift you up every time you need it. Research has proven that having the support we need during our most challenging times is paramount to honing coping skills and striving for wellness. Our supportive network is made of people just like you, who DO know what it's like, who HAVE been there, who CAN help.
TALKMETS HELPLINE
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1-844-ASK SHARE, 1-844-275-7427 Option 6
https://www.sharecancersupport.org/metastatic-breast-cancer/helpline/
