REPLAY: How to Advocate for a Terminal Condition Panel

We were joined by panelists Olivia Salvo, Sarita Edwards, and Abigail Johnston as they discussed the differences, challenges, and opportunities they encountered while advocating for a terminal diagnosis versus a chronic condition. If you weren’t able to watch the panel live, we recommend that you check out the replay for useful tips to advocate for yourself or a loved one living with a terminal condition.

Key takeaways

This is an emotional and deeply personal topic, and all our panelists gave thoughtful, actionable, and passionate responses. The panelists talked about the importance of having open conversations with friends and loved ones rather than people assuming they want to be treated a certain way because of their condition. Sarita added, “Don’t let your fear and discomfort of your life keep you from approaching me and asking questions.” We hope this candid conversation reminds our community members to continue advocating for themselves, their loved ones, and other Health Leaders.

About the panelists

Olivia Salvo is a 22-year-old living with Mitochondrial Disease and Vascular Ehlers Danlos Syndrome. She advocates for better and earlier access to palliative care and hospice and wants to inform people about the misconceptions about these types of care. As a terminally ill patient with other life-threatening diseases, it’s important for her to focus on living life to the fullest, and palliative care has allowed her to do that.

Sarita Edwards serves as CEO and President at the E.WE Foundation, a 501(c)(3) healthcare advocacy organization. She is also the host of the Being Rare Podcast. Sarita began her efforts of advocacy, education, and public policy after receiving a prenatal diagnosis of Edwards Syndrome, Full Trisomy 18 for her son Elijah. Due to the high mortality risk associated with Edwards Syndrome, Sarita was not offered interventions, resources, or other healthcare solutions for her son.

Abigail Johnston works with Metavivor as a Peer to Peer Advocate, with Living Beyond Breast Cancer as a Hear My Voice Advocate, with After Breast Cancer Diagnosis, and she started her own nonprofit, Connect IV Legal Services, to recruit attorneys to do pro bono legal work for Stage IV metastatic breast cancer patients.