Needs Navigation
What I Learned from Sharing my Health Insurance Denial Story
NPAF Advocate Jen Bute shares her perspective on participating in the Policy Consortium Navigators' Roundtable.
Dr. Jennifer Bute (pictured right with her family) is a Professor in the Department of Communication Studies at Indiana University Indianapolis. Her research centers on communication about health in interpersonal relationships and patient-provider interactions. Dr. Bute’s experience navigating a health insurance denial for her son has driven her to learn more about resources for patient advocacy and to join NPAF’s grassroots network. She lives near Indianapolis and enjoys reading, gardening, baking bread, cheering on the Colts and Pacers, and playing board games with her family.
In March of 2025, I participated in NPAF’s Policy Consortium on needs navigation. I had been invited to share my family’s story of coping with a health insurance denial and to reflect on how a patient advocate could have alleviated some of the challenges we faced in securing coverage for my son’s orthopedic surgery. My husband and I had managed the appeals process on our own, and we faced eight months of seemingly endless phone calls and emails and mounds of documentation. We had shared our story with friends and family, but the Policy Consortium Roundtable offered me the first opportunity to express our family’s story in a public space. Telling a group of caring people about our family’s struggle was a liberating experience—I felt like a weight had lifted. More importantly, I learned how hard patient advocates, case managers, needs navigators, and community health workers are fighting for a more patient-centered health care system. Here are my takeaways:
My story is unique yet common
Every story, including mine, is distinct. Yet, what I quickly noticed during the consortium is how far we have to go in shaping a health care system that is navigable, accessible, and affordable. Patients, policy advocates, and health care workers all shared stories about how difficult our current system makes it for patients and families to access the care they need. Issues like affordability, lack of transportation, health and insurance literacy, and even fear keep us from living our healthiest lives.
People on the frontlines are working hard for all of us
I came away from the consortium impressed and heartened by the enthusiasm of those working on the ground every day to help patients and families. I heard from those ensuring that patients can manage their living expenses while undergoing treatment, those who assist with navigating the overwhelming financial maze of coping with a chronic condition, and those who are working to ensure that patient advocates have the training and knowledge required to best assist patients. I felt hopeful about the future of the system for the first time since my son’s surgery was unexpectedly denied by our insurance company—there are people who can prevent surprise denials like ours from happening and people who can assist families when they do.
PAF is there for you!
The Patient Advocate Foundation (PAF) offers direct case management services, financial aid funds, and co-pay relief and can work with clients on a one-on-one basis to ensure that patients can access health services while meeting their basic needs. They can even assist with health insurance denials. If I had known about PAF when my family was appealing my son’s denial, I am certain that they could have helped with the laborious appeals process and eased the emotional toll it took on our family. I hope I can continue to spread the word about this amazing organization!
