ECG’s radio show and podcast, Healthcare Upside/Down, offers unfiltered perspectives on what’s working in US healthcare and what’s not. Hosted by ECG principal Dr. Nick van Terheyden, each episode features guest panelists who explore the upsides and downsides of healthcare in the US—and how to make the system work for everyone.
With the holidays a distant memory, we’re stepping into the new year with lots of resolutions and good intentions. If you’re a regular at your local gym, you know the routine—the big rush of new people suddenly crowding the exercise equipment and filling up classes, only to disappear over the course of the next few weeks.
A similar phenomenon occurs in healthcare. Many people scurry to get as much care as possible crammed into the last few days left in the year. Not because there’s some seasonal need, but because for those with health insurance, the end of the year is when the healthcare financial calendar resets—including deductible and co-insurance payments.
But for anyone struggling with finances or low wages, even buying insurance can be difficult. Many younger members of our community decide they can’t afford the premiums while having to pay for rent, utilities, food, and so forth.
Those who do pay for insurance expect that they can access care in a reasonable time frame and that their care will be covered by their plan. But the reality is often quite different: there is a mismatch between what people expect “healthcare insurance” to cover and what care they can actually get.
For many of us, such gaps in coverage amount to bumps in the road of financial solvency; but when it gets serious—with a cancer diagnosis, for example—these bumps can become mountains.
“When you’re 26, you feel invincible,” says Rachel Rigali, social media and marketing coordinator for Healthcare NOW Radio, who, after a series of misdiagnoses, was told she had cancer. She was paying out of pocket for health insurance, but soon learned her plan’s limits. “I felt guilty, like I wasn’t taking the right steps,” she says. “But I was doing all I knew how to do at the time.”
Rachel ultimately got the care she needed, but the journey was frustrating, painful, and at times overwhelming. It was also illuminating. She joins us on episode 61 of Healthcare Upside/Down to share what she’s learned. Below are a few excerpts.
Discovering the limitations of health insurance.
“I was 26 years old at the time and waiting tables. I noticed a numbness in my leg, which I ignored, but it started to hurt more, fairly rapidly. I was told it was sciatica and to go to physical therapy, which I did for a few weeks. The pain did not get better; if anything, it got worse—to the point where I couldn’t serve tables anymore. I was continuously misdiagnosed until one day the pain got so bad, I went to the emergency room, where they sent me home with morphine and just told me that that should help it.”
“I was an independent contractor; [insurance was] not through my work or anything like that. I was paying just the bare minimum for insurance. I never thought I’d get sick or anything like that. Physical therapy was not covered at all in my plan, so I was paying out of pocket for that. And of course, the last thing on my mind was that I had cancer.”
What happens after a difficult diagnosis.
“I found this doctor, who actually does not take insurance. She was the one who ordered me a PET CT scan. When she got the results, she immediately called me and told me to go to the emergency room [and show them] the scans. From there they set an appointment to meet with another doctor; it took about two or three weeks to get into that appointment. They finally looked at the scans, and that’s when I was diagnosed with Ewing sarcoma [a spinal rare type of bone cancer].”
“So they set me up with an oncologist and palliative care. I would have one appointment one week, another appointment another week, and they were talking about either surgery or chemotherapy. But the pain was just unbearable. [Insurance] was paying a little bit, but I still had co-pays in the hundreds of dollars range, and I couldn’t work at that point. I was very fortunate to have a family and a community that really helped me. My mother was able to step in. I ended up having to move back home because I couldn’t support myself at that point.”
Experience with Mayo Clinic.
“We drove to the Mayo Clinic in Phoenix. It’s a little ways away, and my insurance didn’t cover Mayo Clinic, but that was the only place that was willing to take me in and begin immediate chemotherapy treatment. I started receiving bills from my insurance that were huge. And I told my mom, ‘I don’t know how we’re going to pay these.’ One shot, I remember, was $5,000.
So through the tireless effort of my mother, we start looking for options. Fortunately, there was an opportunity for us to get a donation that ultimately ended up paying for a year of treatment at Mayo Clinic. We had just stacks and stacks of paperwork. It was hard to hold the phone at that point, let alone write out a proposal to be able to get my treatment covered.”
Insights.
“I think we should have free health insurance. It should be a human right. And until you go through that experience, you really don’t see how awful the system really is. I learned a lot. It’s discouraging to see what people have to go through. But at the same time, it’s an opportunity to be able to spread information. I was really lucky, and it’s crazy to say that…but I had a support system.”
Rachel’s experience with health insurance is not uncommon. On the podcast, she talks more about her cancer journey—which is not over. Hear what she has to say.
Edited by: Matt Maslin
Published February 6, 2023