Navigating Insurance Denials: A Personal Battle for Lifesaving Treatment

This week, I’m stepping away from my usual updates on the Social Determinants of Health (SDoH) to share a deeply personal experience. I hope that by bringing this issue to light, we can foster collective growth and learning.

Although I typically keep my personal medical journey private, recent events have compelled me to speak out.

In January 2019, I was diagnosed with Stage 3 Hodgkin lymphoma. Since then, I’ve undergone various treatments, including a stem-cell transplant. Fortunately, for the past two years, a drug called Keytruda has helped keep my cancer at bay, with minimal side effects and significant remission. However, about a month ago, I was blindsided by a denial from my insurance company. The denial came because I had reached the two-year mark on Keytruda, which is the period the insurance company deemed sufficient.

This decision was not only surprising but also disheartening. Despite significant help in filing an appeal from Dr. Kendall Smith at PayerWatch, and my husband, Ryan O’Hara, spending over 18 hours on calls with CareFirst BlueCross BlueShield and CVS Caremark, and presenting evidence from recent studies, my efforts to overturn this denial have been unsuccessful. The insurance company has opted to rely on a four-year-old clinical study rather than the most recent research, which demonstrates that Keytruda continues to be effective, with a 22-percent full remission rate as of Sept. 7, 2023.

The denial of lifesaving treatment by these for-profit entities is a stark reminder of the challenges many face in accessing necessary healthcare. This is not merely about my personal treatment, but a broader issue affecting countless individuals. My oncologist, a respected expert at Mayo Clinic, has prescribed this treatment based on its proven effectiveness and cost-efficiency. Yet, it appears that my insurance has prioritized cost savings over long-term healthcare effectiveness.

As someone who obviously works in the healthcare field, I am familiar with the complexities of navigating this system. I am actively working on alternative plans, but this situation demonstrates a harsh reality: many people lack the resources or knowledge to advocate for themselves effectively. This denial of care, despite my access to support and expertise, raises serious questions about how patients without such resources cope with similar challenges.

The frustration of dealing with an insurance company that seems more concerned with cutting costs than saving lives is compounded by the personal stakes involved. This is not just about me; it’s about the broader issue of insurance companies dictating the terms of care, often while overriding the recommendations of dedicated medical professionals.

In sharing my story, I hope to shed light on this critical issue and encourage a dialogue about the need for systemic change. No one should have to fight for access to lifesaving treatment, and no healthcare decision should be driven by profit rather than patient welfare. The goal should always be to ensure that every patient receives the care they need.

References:

Armand P, Zinzani PL, Lee HJ, Johnson NA, Brice P, Radford J, Ribrag V, Molin D, Vassilakopoulos TP, Tomita A, von Tresckow B, Shipp MA, Herrera AF, Lin J, Kim E, Chakraborty S, Marinello P, Moskowitz CH. Five-year follow-up of KEYNOTE-087: pembrolizumab monotherapy for relapsed/refractory classical Hodgkin lymphoma. Blood. 2023 Sep 7;142(10):878-886. doi: 10.1182/blood.2022019386. PMID: 37319435; PMCID: PMC10624931