I learned very quickly after my multiple myeloma diagnosis in 2022 that self-advocacy is essential for overcoming treatment barriers and accessing the care you need.
My first major test came when my oncologist prescribed Daratumumab as part of my initial treatment regimen. My commercial insurance company denied coverage.
Their explanation was baffling. They claimed the clinical documentation did not support medical necessity based on the health plan’s criteria.
I immediately asked my care team what information had been submitted. The documentation was extensive—lab results, imaging scans, and clinical notes—everything that should have supported the treatment decision. So what exactly was missing?
My myeloma team filed two internal appeals with the insurance company. After the first denial, my hematologist requested a peer-to-peer review with a clinician from the insurance company to explain why Daratumumab was necessary.
The result? Denied again.
At that point it was time to pursue an external review.
Every state provides a process for patients to appeal commercial insurance denials through a state insurance department or commissioner’s office. Research shows that roughly half of insurance denials are overturned at this level.
I researched the process for my state and began preparing the appeal. My myeloma specialist wrote a letter explaining why Daratumumab was critical to my treatment. I also wrote my own letter outlining how the insurance company had misapplied its own medical necessity policies.
During the internal review period, which took about thirty days, I called the insurance company repeatedly to understand:
As someone paying significant monthly premiums, I believed I had a right to that information.
After multiple unsuccessful attempts to get clear answers, I escalated the issue further. I emailed the insurance company’s CEO and copied the CEO of the cancer hospital, explaining the denial and the difficulty I was having obtaining information.
Shortly afterward, I received a call from the insurance company’s lead pharmacist.
She acknowledged something shocking: the company had not fully reviewed the clinical documentation submitted by my physician, and the denial had largely been driven by the high cost of the drug.
Meanwhile, while this process played out, I was paying $17,000 per week out of pocket for Daratumumab.
Eventually, the state insurance department overturned the denial. I was reimbursed for what I had already paid, and the insurance company began covering the treatment moving forward.
I am convinced that my persistence made the difference.
At one point, my myeloma specialist suggested moving to a less effective treatment because the insurance company had denied Daratumumab.
I refused.
Instead, I drove the appeals process myself. I researched every step, stayed in constant communication with my care team, and made sure the appeal didn’t get delayed or lost in the system.
Everyone involved in healthcare is busy. I didn’t want my treatment to fall through the cracks.
Unfortunately, insurance denials for critical treatments are becoming more common. When they occur, patients often need to become informed, organized, and persistent advocates for their own care.
Based on my experience, several steps can make a difference:
Self-advocacy matters because no one is more invested in your health and well-being than you are.
It can remove barriers and open the door to the care patients deserve.
I spent my career working on the business side of healthcare, where I understood the provider and payer systems well. But it wasn’t until my own cancer diagnosis in 2022 that I truly saw the system from a patient’s perspective.
Since then, I’ve seen firsthand how healthcare disparities and access barriers can limit opportunities for prevention, diagnosis, and treatment. These barriers can lead to worse health outcomes, higher rates of chronic disease, and increased mortality.
My hope is that my knowledge of the healthcare ecosystem can help other patients navigate the system and advocate for themselves.
By working together, we can push for better access to care for everyone.
Editor’s Note:
Patients Rising shares patient stories to raise awareness and reduce isolation among patients and caregivers navigating serious health conditions. Stories are submitted by patients and may be edited for clarity and flow while preserving the author’s voice. The experiences described are personal accounts and should not be considered medical advice.