The Hidden Battle: The Fight Against Insurance
Renee
State: California
Congressional District:
Diseases
Blood Disease, Cancer
Issues and Challenges
Renee has encountered: Insurance Issues, Prior Authorization
My Story
In November 2021, I was diagnosed with multiple myeloma.
I was in shock! I lived a healthy lifestyle, so cancer was the last thing I expected. There's never a “good time” to hear those words, but I was fortunate it was during insurance open enrollment. My oncologist told me that multiple myeloma is one of the more expensive cancers to treat and urged me to get the best insurance coverage I could.
I switched to a top-tier plan for the following year as it was the most cost-effective choice for the treatment that lay ahead - chemo, costly meds, weekly labs and doctor visits, and possibly a stem cell transplant if things went well. I was also grateful to receive a grant from the Leukemia & Lymphoma Society to help cover many of these expenses.
Treatment went well, and I received written pre-authorization for my stem cell transplant. My transplant nurse reassured me I had great coverage which was a huge relief. At least, I thought so.
A few months after my SCT, I learned that every single one of my claims was being denied.
How was this possible? I had written pre-approval. I had paid every premium. But when I started calling to find out what was going on, I was bounced between my health plan and my insurance group — each one insisting the other was responsible.
I was still exhausted and actively recovering and now I was forced to figure out why my pre-approved care wasn’t being paid. I was in tears more than once. I didn’t know how to navigate the system, but finally one representative told me he could file a grievance on my behalf.
A month later, the decision came back in my favor: my insurance company (not my health plan) was responsible for all transplant-related care for a year following my transplant. What an enormous relief!
But the struggle wasn’t over. All those denied claims had to be reprocessed and it was a mess. Many were duplicates, others were only being partially paid, and others were still pending. Meanwhile, the clock was ticking. My grant had strict reimbursement deadlines, and if the claims weren’t processed in time, I would lose that funding and be left responsible for the costs myself.
So I stayed on top of it - endless phone calls, faxing documents to my health plan, retelling my story to a new claims representative every time. When I finally reached a supervisor, she was only available at the end of the day and had no direct line. It was frustrating, maddening, and incredibly stressful at a time when I should have been focusing on healing.
The last claim was finally processed one week before my grant expired.
No patient should have to go through this. We shouldn’t have to chase down our own claims or fight to make insurance companies honor its obligations. Our system places an unfair burden on patients, especially those that don’t know the ins and outs of the insurance system. Appeals and corrections can take months creating financial and emotional strain when people are most vulnerable.
Things must change! We need laws that automatically enforce timely payment of approved claims—within 15-30 days—with real penalties when insurers fail to comply. Because dealing with cancer is hard enough —we shouldn’t have to battle our insurance companies, too.
My Motivation and Inspiration
Having an HMO, I thought if care was pre-authorized there would be no question about getting claims paid. However, after hearing that all my claims were being denied for pre-authorized care, I had to battle with my insurance company to get these paid. I had to file a grievance and spend countless hours on hold and retelling my story to a new claims person to get these resolved.. They were finally paid, but it took months. Insurance companies need to be held accountable to pay claims in a timely manner instead of putting the burden on the patient to follow up.
I’d like to see this change and recently I became aware of two bills that were referred to the House and Senate committees for review and consideration (HR 4710 & S.2420). These bills are designed to enforce insurance companies to make timely payments after patient favorable grievances, and they would incur penalties for delaying payments or non-compliance.
Hopefully my story can show how important these bills are and help them move forward in congress.
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