When myeloma care hits a snag with new health insurance problems

Before I got multiple myeloma, I didn’t think much about health insurance. I didn’t even have health insurance 40 years ago! I was young and I trusted to luck.

The benefits for my second job included health coverage. But even then, I didn’t think much about it. I just chose the cheapest plan. After all, I was young and I trusted to luck.

I’ve had employer-based coverage ever since. That’s common here in the U.S. I’m in a health maintenance organization (HMO), so I have a network of doctors I can see and set payment amounts for things like office visits and hospital stays.

Unless you change jobs or your employer changes insurance offerings, the whole thing is pretty much on autopilot.

Until it’s not. Cancer — or any serious condition — makes you very aware of how insurance works, whether you want to know or not.

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Paperwork delays

I started paying attention to my insurance shortly after my diagnosis because I kept getting turned down for outpatient treatment. It took three weeks and a lot of phone calls to the insurance company and my oncologist’s office to track the problem down to a paperwork error. As soon as the approval came in, the oncologist’s office called to ask if I could get there for treatment that very day. And I did.

Three lessons learned here: Always have a full charge on your phone, persistence is paramount, and the first answer is not always the last word! If you get a denial, start making calls.

Things went very smoothly after that little bump. Contrary to the perception that insurance companies only approve the lowest levels of treatment, I was sent to the University of California, San Diego (UCSD) because it was deemed a center of excellence for myeloma care. I was even assigned a nurse case manager who called me regularly to make sure I was getting everything I needed. And I got complete coverage for Revlimid (lenalidomide), a drug that had a monthly list price equal to the cost of some new cars!

All of this put me back on autopilot. I didn’t need to think much about insurance — until a few weeks ago.

A new hiccup

I got a letter from my insurance company about its contract negotiations with my primary care provider’s independent physician association (IPA). Also called an independent practice association, an IPA handles business matters for groups of doctors, including contracts with insurance companies. The two sides hadn’t yet reached an agreement, meaning the IPA might leave the HMO’s network on July 1. I could stick with the primary doctor I’ve been with for years — at a higher cost. Or they could assign me a new primary doctor.

What wasn’t clear in the letter — and what the customer service agents couldn’t clarify — was whether I’d also lose access to my UCSD oncologist.

Have you ever seen the math lady GIF of a confused woman overlaid with complex equations? That’s what I’ve been feeling like as I try to figure out my best next step. I’ve sorted through the different primary doctors available in my area to see who had a partnership with UCSD. I found one and was ready to make the change — then another letter came in saying the insurance company is negotiating with UCHealth and that may not be an option for me as of July 1.

That took me from the math lady GIF to the Charlie Day conspiracy theory GIF!

I don’t want to change

This isn’t the first time I’ve changed doctors because of insurance issues. I even changed UCSD oncologists because the first one took a new job. But I’ve developed a good relationship with my new oncologist. I’m being treated at my closest National Cancer Institute-designated Comprehensive Cancer Center, defined by my insurer as a center of excellence. I feel like a change is being forced on me.

I’ve downloaded Continuity of Care request forms to try to keep my doctors through the end of the year. That’s when I can change health plans if necessary. I’ve also got the number of Triage Cancer handy; it’s a nonprofit that works to educate patients about legal and financial options.

And I’ve got my fully charged phone, persistence, and the knowledge that the first answer is not always the final word.

Wish me luck!

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.