Fighting for Answers: The Journey from Patient to Advocate

In this episode, Victoria Killian shares her decades-long journey navigating the medical system with chronic illnesses, beginning at age 12 with debilitating back pain. She describes her struggles with missed diagnoses, the eventual discovery of ankylosing spondylitis, setbacks from conflicting medical opinions, and the ongoing search for clarity around a potential connective tissue disorder. Victoria explains how her personal experiences led her to embrace advocacy, eventually becoming a Board Certified Patient Advocate and launching her practice, Chronically Advocating. She discusses the importance of self-advocacy, strategies for respectfully challenging doctors, systemic issues in insurance and prior authorizations, and how professional advocates can help patients facing complex medical challenges.Resources Mentioned: chronicallyadvocating.com Spondylitis Association Arthritis Foundation HLAB27 blood test Remicade, Humira, Enbrel, Symzea (TNF inhibitors) Cymbalta California Department of Managed Health Care (DMHC) Information on prior authorization reforms in California Pharmacy Benefit Managers regulation in California