Roads We've Traveled

Notes from the Road: My Health Insurance by the Numbers


With the passage of health care reform in the House and all it could entail, I began going through my insurance records from 2012-2014, when my acute lymphoblastic leukemia was at its worst. And I found a number I’d like to share with you. That number is: 746,686.

That number represents the combined cost of three major parts of my leukemia treatment. First, was Induction Chemotherapy, at Lahey Hospital is Burlington, Mass. Two and three where two stays at Brigham and Women’s Hospital in Boston. The first stay was for my bone-marrow transplant, which lasted a month and two days. The second was for treatment of graft-vs-host disease, which was a little over three weeks.

Still, that is still only a portion of the total cost of my treatment. What this number does not include is following:

  • Outpatient Maintenance Chemotherapy at Lahey Hospital
  • Skilled Nursing Visits
  • Hospital Stay for pneumonia
  • Surgery on necrotic tissue
  • Hospital Stay for Neutropenic Fever
  • Lumbar Puncture (Spinal shots)

How it all Adds Up – According to my Records

According to my records, a single bag of Rituxan — a drug used to treat Leukemia – can cost $12,159. Certain lab tests run anywhere from just under a hundred to several thousand dollars, depending on which hospital you go to. A single day of diagnostic tests at Dana Farber Cancer Institute (DFCI) could cost just over $14,000. A single doctor’s visit to DFCI — including tests and infusions ran an average of $4,000 and believe me, there were a lot of visits. A single lumbar puncture, complete with fluoroscopic guidance, tests, medicines and so on, can cost over $8,800. Copays for doctor visits and medication add up over time. At one point, we had gotten behind and had to fork over $800 just in copays.

As you can probably guess, by now, the cost of my treatment must be well over a million dollars and puts me, firmly, into the “preexisting conditions” column. So, yes, for me the health care debate is a very personal one.

Without insurance I would, at best, be bankrupt. What’s far more likely though, is that I would be dead. The doctors at Dana Farber told me, in no uncertain terms, that without financing from my insurance company, they could not proceed with the transplant. Not that my insurance company balked at paying. Once they knew the situation, they signed off on the financing faster than you could say “total body radiation” but remember, I had a serious advantage in that I already had fantastic insurance.

Other Advantages

When I was diagnosed, I was a special education math teacher in an urban school district. I could have made buckets more in the private sector, but I decided to teach. Part of the working for as a municipal employee is that it is understood that, while you will not get rich, you will have good benefits. And, after I was sick, the School Superintendent, Fred Foresteire, did the amazingly kind act of supporting me by keeping me on payroll. This kept my insurance going without resorting to the exorbitant costs of COBRA.

More than that, I had the support of a vast and loving family and a small army of friends and co-workers that were willing to help. The Winchester Boat Club, at which I had worked for the last six summers, held multiple fund-raisers for me. Colleagues in Everett public schools – such as Neal Plotnick, and Chrissy Clawson – banded together with other employees to help as well.

I could name so many others who helped, but that could take weeks. Suffice it to say, I will always be eternally grateful to those who helped me and mine. It’s a kindness which I can never fully repay.

Plus – and this cannot be overlooked – I live in Massachusetts, a state with amazing health care, a great health care exchange, and some of the best hospitals in the world.

So many things went wrong that summer: My diagnosis, the death of my younger child, my mom being diagnosed with kidney cancer, my eldest brother’s father-in-law dying of a pre-leukemia condition.

And yet, so many things went right. Despite everything, I was very lucky. And the luck, good and bad, seemed very random — circumstance, genes, the whole nine yards.

Not everyone is so lucky.

A Long Look

This whole situation has made me take a very long and hard look at myself and ask these questions: Why me? Why did I luck out when so many people did not? Why did I have all these advantages when so many do not? Am I any more deserving than say, a poor single parent, or am I just damn lucky? And finally, now that I lived when so many others didn’t, do I have a responsibility to help?

I really only know the answer to two of the above questions. First, is that I am not any more deserving than anyone else. Second is that yes, I do have a responsibility to help others. How that takes form is still up in the air but writing about it is a start.

Compassion and Fear

Since the passage of health-care reform in the House, I’ve seen social media virtually explode with self-righteous anger, bizarre comparisons, and suggestions that people with preexisting conditions have not led good lives. In general, there seemed to be a total lack of compassion and empathy on the part of some. It’s almost as if people are naive enough to think that sickness and illness can’t happen to them.

At first, this lack of caring disturbed me to my core. Do people really believe that serious illness is some sort of divine or karmac payback? And are they arrogant and/or foolish that they believe they are the ones to judge? Are people so callous that they will look at the sick and dying dying and simply shrug and say, “sorry bud, not my problem”?

Perhaps some people are, but I honestly believe that people’s supposed apathy is more about pure unadulterated fear. Because the truth is, it doesn’t matter what kind of life you’ve led, you can get cancer. I’ve known people who’ve smoked for years on end and never got cancer. And I’ve known people who are as healthy as the proverbial horse, but for one reason or another, got very sick and died.

The fact that this kind of thing can happen to anyone at any time and for no apparent reason is very scary and, therefore, not something people enjoy even acknowledging let alone discussing.

Genes, environmental conditions, and any number of factors simply do not care about the life you’ve led. These circumstances don’t care about your moral compass, or if you go to church, or have “traditional values” (whatever the hell that means), or hit the gym every day.

In the end, no one — you, your family, your friends — is immune.

So, the next time you ask just why should help pay for someone else, you need to remember this: There is every chance that in the future that someone else may help to pay for you, or for someone you love.