Carol Didn't Have to Die

 

Carol died in the wee hours of the morning on August 18, 2021. She left a gaping hole in the lives of the people closest to her. The hearts of all the people she touched will mend, but be left with invisible scars. Carol and my wife, Ellen, were besties, in the truest sense of the word. Though for the last 20 years we lived half a country away from Carol, we'd generally see her once or twice a year. She would visit her family in Michigan and swing by to hang with us for a few days, or we'd vacation together, escaping to someplace warm for a week during the depths of winter when her teaching calendar allowed. Before her cancer diagnosis several years ago, Ellen and Carol would visit major league ballparks they'd not been to before to take in a game and explore some city often unfamiliar to both of them. In between, they would talk on the phone a couple times a week, often for hours at a time.

Their friendship ran over the course of nearly forty years, encompassing the years they played and coached volleyball together, while we raised three sons, and Carol taught thousands of elementary and middle school students the practical benefits of a healthy body through physical education, my boys included. If their friendship was the sun of the solar system, I was but a minor planet orbiting in its outer reaches. Yet, if I picked up the phone when Carol called, for those few minutes until I handed the phone off to Ellen, I was at the center of that solar system. Carol was engaging and outgoing in a way I think very few other people are.

There is, of course, no single reason Carol was taken before her time. Still, she didn't have to die now. Not the way she did. I think her last few weeks are damning testimony to the way our health care system operates in the United States, denying treatment to people for no medically sound reason when they need it most. Carol is a shining example of how we can have the most advanced health care system in the world but still discard many of our citizens long before their true expiration dates. At the front end of her most recent treatment for a recurrence of her cancer she unquestionably got world class care. Somewhere though, a bean counter at an insurance company said, “I'm sorry, Carol is out of the right kind of beans.” From that point on, she was effectively locked out of the sort of treatment she required to regain her health.

I have a cycling jersey created when one of my bike buddies was diagnosed several years ago with a particularly aggressive cancer. I should get a companion jersey which reads “fuck insurance.” It's not like Carol had poor insurance or no insurance. As a public school teacher in New York, she was graced with as good an employer-provided health insurance plan as just about anyone can get. Though she died during the 2021 COVID surge, she wasn't denied an ICU bed. The surgeons and oncologists at the Dana Farber Cancer Institute and Brigham & Womens Hospital are the best in the world. She simply wasn't given enough time in rehab after surgery and radiation treatment to adequately prepare for the chemo which came next. This wasn’t because slots in rehab weren't available. It wasn't a medical decision. Her doctors said she needed more time in rehab. She had patient advocates lobbying her case. I’m sure there was no malice on the part of individual people at the insurance company who rejected requests for more rehab time. It was a parameter of her health insurance contract. It’s impossible for it to have been a medical decision. You get X days of rehab. When that’s used up, that's it.

Treatment for many forms of cancer often includes surgery, radiation, and/or chemotherapy, and in many cases (including in Carol’s original encounter with the disease) targeted maintenance therapies based upon an individual’s genetics. Rehab is required after the first three steps to give the patient time to recover before the next assault on their systems. When insurance doesn’t get in the way, the results are better. Consider a study of cancer patients at the World Trade Center Health Clinic as recounted by Dr. Steven Markowitz on a recent episode of the PBS NewsHour:

[T]he health care that's given for the responders and the residents is very good health care. It's excellent care.

And, in fact, a recent research study looking at cancer among the program participants has demonstrated that they do better in this program than they would have if they were part of the general population of New York state, in fact, 28 percent better in terms of cancer outcome, either cure and or long-term survival.

Though not the only reason for the observed better health outcomes among the WTC first responders, the authors suggest that “[t]here may be survival benefits from no‐out‐of‐pocket‐cost medical care which could have important implications for healthcare policy…” I interpret “no‐out‐of‐pocket‐cost medical care” as (at least) medical care without an insurance company dictating what is and isn’t allowed. Carol wasn’t offered the chance at a better outcome.

Over more than a century of research and practice, the medical system in the United States has developed effective treatments for many types of cancer and other chronic, life-threatening diseases, but as a side effect of wage freezes put in place during World War II, instead of anything approaching a single payer system, we wound up with a for-profit health insurance system which at the absolute worst of times can side with profit over sound medical practice. As a country we've been trying unsuccessfully ever since — starting with Harry Truman — to correct that fundamental flaw in our healthcare system. Don’t forget, everything which happens after your premium payment lands in your insurance company’s bank account lands on the loss side of the ledger for them and reduces the company’s profits. They don’t ever want to pay out on claims, and often won't unless forced to (e.g., ACA's coverage for preexisting conditions). Unless and until we decide to make the necessary changes to our healthcare system, that's how it will remain. We will probably continue to lead the world in advances in medical science, practice, technology, and expertise, yet deny many of those advances to people when they need them most.

When any suggestion of changing or eliminating our for-profit health insurance system crosses a politician’s lips (“single payer,” “Medicare for All,” "public option," etc), quotes like the following invariably turn up in the media reports and advertising: “I like my health insurance plan. Threaten it at your peril.” I assert that people saying those sorts of things have either never truly needed their insurance, or they are (perhaps unwitting) insurance industry shills. Sure, they like that their employer pays the bulk of their premiums (ignoring that that they might receive a smaller salary as a result), free shots, annual checkups and low-cost generic drugs. And remember that time little Johnny had to have his tonsils out? You didn't pay more than a small deductible. Who wouldn’t like that?

But when you have to face a truly life threatening diagnosis you quickly learn who’s making many life-or-death decisions about your care. As my father used to say, "I'll give you three guesses. The first two don't count."