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When the Advocate Needs an Advocate

In 2014, about a year after my cancer diagnosis.

Part of the reason I became a patient advocate was inspired by my own cancer experience.

I was diagnosed with metastatic breast cancer with several areas of metastasis to my bones in 2013. For most of the past 8 ½ years, my treatment has kept my cancer well controlled with no evidence of disease (NED). That all changed at the end of last year, however.

My most recent scan showed three small areas of bony disease. Because my cancer is so localized, both my medical oncologist and radiation oncologist recommended a specific radiation treatment, stereotactic body radiation therapy (SBRT), which would treat these spots without damaging nearby tissues.

Great! I would receive treatment with few side effects while also keeping the cancer at bay. That is, until my insurance company (Aetna) denied the treatment.

The Appeal

When Aetna refused to cover my treatment, I was both angry and frightened. The stress an insurance denial like this represents for someone who is already under duress from a serious medical condition is overwhelming. How could a physician who knew very little about the details of my case make a life-limiting decision about my treatment? What would I do if I couldn’t get this denial overturned?

My radiation oncologist had already made a “peer-to-peer” appeal to Aetna’s radiation oncologist with the same results. I knew it was time to take matters into my own hands. Luckily, doing what I do, I knew how to approach the situation and make a strong appeal for myself. But what about other folks out there with less experience and understanding of the world of insurance and healthcare?

Within a couple of days, I faxed a four-page appeal to Aetna in which I documented medical research, radiation oncology treatment guidelines, Medicare standards, and the insurance company’s own “Clinical Guidelines for Medical Necessity Review of Radiation Therapy Services.” I requested an expedited appeal, for which a decision is made in 72 hours as opposed to 30 days.

The next morning – and on a Saturday at that! – I got a call from Aetna that my treatment had been approved. Relief flooded over me, along with a huge sense of accomplishment that I had advocated for myself and won.

The Article

You can imagine my surprise when a few weeks later I was browsing an email newsletter and came across an article entitled “Cancer Patients Win Lawsuit Against Aetna Over Denied Treatment” around the exact same treatment I had just appealed. I couldn’t help but get fired up all over again.

Comparing my case to the cases in the article highlights the inherent arbitrariness and “deny, deny, deny to preserve profits over lives” culture of our insurance system. Reading this article, I couldn’t help but feel guilty and a little disgusted that I received treatment while others experiencing the same disease were denied simply because they lacked the knowledge or experience to effectively fight back and advocate for themselves.

If you think this is just an Aetna problem, think again. For example, United Healthcare recently launched an unfair and unsafe insurance denial for hospital coverage for one of my clients who was admitted with dangerously high blood pressure and heart rate because “there were no vision problems associated with your high blood pressure.” Per that denial, this client would have had to display symptoms of a stroke before he was able to receive coverage. We’re appealing this decision as I write.

The Advocate

I hope my experience will serve as a reminder not to be defeated by these insurance denials or accept them at face value. We as individuals have the power to push back against the larger system and advocate for ourselves. In some cases, our lives really do depend on it.

In fact, there is evidence that suggests the appeals process is often effective. One Kaiser Foundation study found that, in 2019, about 40% of enrollees in Affordable Care Act (ACA) plans won insurance appeals mounted directly against the insurance company. And, in case that doesn’t work, the ACA gives most patients the right to appeal to an external organization whose decisions are binding.

Ultimately, patients and physicians should make treatment decisions, not insurance companies that have very limited insight into these cases. I always encourage you to advocate for yourself when a decision doesn’t sit right.

And, if you need a little extra support navigating the appeals process, that’s exactly what patient advocates like me are here for.


Schedule a free consultation for a personalized assessment of your needs.

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