The Costs of Catastrophe

I’ve talked about how, from a medical perspective, as my neurologist at UVA put it, “for being so unlucky, I’m very lucky.” I want to talk about another way in which that theme rings true for me. My treatment and rehabilitation come at a massive financial cost, which hit the moment I arrived in the emergency room and will keep adding up for some time as I continue the necessary physical and occupational therapy. I’m very lucky, but this experience has revealed to my family and me just how disastrous the U.S. health insurance system is for patients and their families. I want to share this aspect of my journey not to highlight my own good fortune but to provide a snapshot of some of the ways the health insurance system does little to ease the burden of a serious injury or illness on patients and their families.

I am not a policymaker, and I don’t have a specific solution to offer. I just think it’s important to share my experience, because I want all Americans to open their eyes to the fact that our system does not work. We should all work to elect policymakers who recognize this and who are eager to do the work it will take to implement a real solution that is focused on care for patients and their families.

I was an independent consultant for 30 years. During those years, I had many adventures: I summited Mt. Rainier, rafted the Grand Canyon, heli-skied in British Columbia—all without a thought about short-term disability insurance. Luckily, about three years ago I decided to take a permanent position within a wonderful company that offered full benefits, including short-term disability insurance. If it weren’t for that insurance—not to mention the health insurance Linda and I both get through my company—I have no doubt that we would be close to bankruptcy as a result of my accident.

As it is, I’m a wealthy person. I’m very fortunate to be wealthy; I did work hard to get where I am, but I won’t pretend that I didn’t do it with a great amount of privilege and on the backs of generations of my family that came before me. There are millions of Americans for whom accumulating the kind of wealth that I have, that my friends have, that my daughters have, is simply not possible, because it’s built generationally. If this accident happened to nearly any less fortunate American, they would surely find themselves deep in debt. There is just no way that they could pay the kinds of bills I’m amassing and will continue to amass over the coming months or years. And, in part because of those financial restraints, many Americans do not even have access to the caliber of care that I have received—from the amazing NNICU at the UVA hospital to the incredible inpatient rehab facility at Sheltering Arms Institute. There is no doubt that better initial care reduces the overall cost of an injury like mine over time: the better the care received in the first few weeks after an injury, the greater the recovery, and the greater the recovery, the less day-to-day help and medical care I will require down the road.

Even in my case, my savings will be depleted significantly, and there’s also a chance that I will lose my health insurance: short-term disability is just that—short-term—so it will run out after six months. I will turn 65 and qualify for Medicare within a year, and my incredible company is doing all they can to support me in the meantime, but most are not so lucky. The restriction on (or in many cases utter lack of) short- or long-term disability is a systemic issue that causes our most vulnerable to be unable to access the healthcare they need because they are unable to work. Linda has been able to continue working (because she is a superhero), but a serious injury or illness inevitably also puts a burden on the patient’s caretakers, usually family members who likewise have limited family leave, if any. You shouldn’t have to be a superhero to be able to continue providing for yourself and your family after a catastrophic event.

I’m also very lucky that I have two physicians in my family—my middle daughter Lauren and son-in-law Ben—who understand how medical codes and insurance billing work. Insurance companies are for-profit organizations. They necessarily prioritize providing wealth to their able-bodied shareholders over providing proper care to those who need it. They refuse to cover any charge they think they can get away with rejecting, and you have to go back and fight those rejections. The system lacks transparency and is full of grave inconsistencies; no two interpretations of the same benefits policy are the same. Last week, Lauren called our insurance company three times with the same specific questions, and she got three different answers to her questions. This means that even those few patients and families who have the time and ability to be proactive and ask the right questions still can’t adequately prepare or avoid unnecessary charges.

That’s where having two physicians is so helpful to us, and will likely save us thousands of dollars, because they can help make sure the insurance company pays for what should be covered on my bills. Lauren and the other three in my “army of Coogle women” worked preemptively to make sure as much of my home equipment as possible is covered—wheelchair, hospital bed, shower chair, etc.—which is an area where many patients spend thousands of dollars that could have been avoided with the necessary knowledge. There’s something wrong with an insurance model that requires that much patient work, without any holistic guidance, and with so many pitfalls, all while the patients and families have little or no bargaining power and are busy dealing with all the other aspects of regaining and maintaining life after trauma.

Health insurance and family leave can be done better. Indeed, in many countries it is done significantly better. “It’s no coincidence,” as one columnist recently wrote, “that the United States, alone among advanced industrialized countries, does not have universal health care.” Of course, no country has perfect healthcare—every system has its downsides. But I believe the model in this country is particularly ineffective, where insurance is illogically tethered to one’s current employment and provided largely by companies whose ultimate goal is profit, not superior patient care. Many people I know think we have a free-market health insurance system, and that it therefore works just fine. But, as others have explained, because the patient is not actually treated as a customer, our system “has the illusion of a free market and the illusion of regulated market with the apparent benefit of neither.” This system is a drag on the economy—and on the lifespans of individuals.

If I had had my accident three years ago, we would have joined the millions of Americans facing medical bills that swallow their net worth. Or I wouldn’t be getting the amazing care I’m getting—which would be a tragedy in itself.