I’ve realized since my Multiple Myeloma diagnosis in 2022 that self-advocacy is critically important to eliminating treatment barriers and improving access to needed care.  

One example:  My initial (induction) therapy included a drug called Daratumumab which was denied by my commercial insurance company.  They stated that “the clinical documentation provided did not support medical necessity based on health plan criteria.”  What???  I asked the myeloma team what documentation they sent, and it looked very comprehensive to me (lab tests, scans, clinical notes, etc.). So, what was missing?  Why was this denied? 

My myeloma team appealed internally to the insurance company twice.  I asked that they request expedited reviews to speed up the process.  After the first denial, my hematologist asked for a “peer-to-peer” phone call with a clinician from the insurance company.  After this discussion, they denied Daratumumab again.  Time to go for an external review.  
Every state has a way for patients to appeal commercial health insurance decisions, usually through a state insurance department or commissioner’s office.  Data show that roughly 50% of insurance company denials are overturned at the state level (varies by state).  I googled where to send the appeal for my state.  My myeloma specialist wrote a letter explaining why Daratumumab was important for my treatment.  I wrote a separate letter explaining that the insurance company misapplied their policies in determining whether to pay for my treatment (which was obvious after I read them.)

During the 30 days that it took to go through the internal review process, I was relentless in calling the insurance company to (1) understand what clinical documentation they needed, (2) understand the denial rationale, and (3) ask for their health plan policies regarding medical necessity.  As a member paying high monthly premiums, I have a right to this information.  

After several attempts at trying to get someone on the phone, I sent an email to the insurance company CEO and copied the cancer hospital CEO regarding the denial and the challenges getting requested information.  Shortly after, I received a call from the insurance company’s lead pharmacist who sent me their health plan policies.   She admitted that they did not look at the clinical documentation sent to them by my physician and that the denial was due to the high cost of Daratumumab.  
The denial was ultimately overturned by the state insurance department.  I had been self-paying $17,000/week for Daratumumab. I ultimately was reimbursed and the insurance company paid moving forward.   

I have no question that my self-advocacy made this happen.  My myeloma specialist wanted to proceed with another less-effective treatment since the insurance company denied Daratumumab.   No way!!  I began driving the appeals process.  This may sound daunting, but I researched the steps involved and worked closely with my myeloma team.  Everyone is busy.  I did not want this to fall through the cracks or get delayed unnecessarily.  

Increasingly, we are seeing insurance companies deny critical treatments.  When this happens, a patient’s best strategy is to become a well-informed, persistent, and organized advocate.  Here are steps to consider:  

1.    Understand the denial, 
2.    Request a copy of the insurance policy that spells out what is covered and the definitions of medical necessity. 
3.    Get the support of your care team (they need to submit medical rationale)
4.    File an internal appeal with the insurance company to include why treatment is necessary along with clinical documentation.  Track delivery and receipt closely, 
5.    File an external review with the state insurance department or commissioner’s office, 
6.    Call and escalate,
7.    Be organized and persistent. 
Self-advocacy is important because no one is more invested in your health and well-being than you are.  It matters in removing barriers and increasing access to the care we all deserve.

My Motivation

I worked on the business side of healthcare for my entire career.  I understood the provider and payor worlds but didn’t truly understand the world of the patient until my cancer diagnosis in 2022.  Since then, I’ve seen healthcare disparities and limited access negatively impact patients by creating unequal 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 help ensure equitable access to care for everyone.

Editor's Note: We share patient stories to raise awareness and reduce isolation in the rare disease community. The experiences described are personal accounts and should not be considered medical advice.