[cancer|personal] How expensive is it to sicken and die?

I mentioned yesterday on social media that in 2013, my household’s out-of-pocket medical expenses exceeded $30,000. Several people asked me how this broke down.

Note that my health insurance covers both [info]the_child and Mother of the Child as well as myself. About $10,000 of that $30,000 was spent on their needs, which I won’t specify further as I don’t discuss their healthcare on my blog for reasons of privacy. Suffice to say that in their own right, they had a very expensive year.

My direct expenses were as follows, in round numbers.

COBRA (Q3-2013 plus January 2014) $6,200

Medical Copays $6,000

Ancillary Supplies $3,500

Pharmacy Copays $1600

Optical $800

Home Care Supplies $700

Massage and Bodywork $500

Dental $350

Misc $50

COBRA is a household expense incurred due to me going on long term disability and losing my employer-sponsored coverage, for which I was paying about $550 per month pre-tax as my employee contribution. I traded that for a $1,600 per month post-tax expense while on a reduced, limited income from disability.

Dental isn’t really a cancer expense.

Optical is money I would not have spent if I hadn’t been sick, as I had to get a new pair of glasses that rested lighter on my face due to the severe skin conditions caused by the Vectibix I was being given through the fall of 2012 and spring of 2013.

Pretty much everything else on there is a direct cancer expense. FYI, “Ancillary Supplies” is nonmedical purchases like the powered recliner I needed to elevate my feet to deal with the hand-foot syndrome caused by Regorafenib — things I would never have bought for any reason other than being ill.

I’m not counting two other major categories of expense. There’s additional ancillary supplies that I might eventually have bought anyway even if I were not sick, such as the large screen LED television because I have so much trouble reading that I have to get my entertainment that way now, and my tiny, elderly television wasn’t working well for me. Also the Windows8 tablet I bought so my power-of-attorney holders, and later on my executor and trustee, can manage my household accounts. Those I have enumerated, but don’t count as medical deductions for tax purposes so they’re not in the above table. They come to roughly another $6,000.

Also, there’s indirect expenses such as increased heating bills due to my reduced cold tolerance, increased food bills due to my intermittent dietary eccentricities, and so forth. That’s a bit harder to account for, but at an educated guess, another $6,000.

I’m also not counting the substantial legal, accounting and financial planning fees I’ve paid for disability counsel and estate planning. Nor am I counting the substantial expenses associated with my funeral arrangements and memorial arrangements. I paid out well over $12,000 in 2013 in this category, and will spend rather more than that in 2014, even assuming I die this year as expected.

Of course now, with the NIH activity, we’re looking at expenses ranging from $4,000 to $7,000 per month for travel and lodging for me and my caregivers. Not all of that comes out of my pocket, but even with a nominal 1/3 split between me, Dad and Lisa Costello, that’s $1,300 to $2,300 per month I’m spending, on top of most of the above expenses.

Historically, since my first metastasis in 2009, I’ve averaged about $10-12,000 per year in expenses. Last year got much more expensive because my illness got much worse. This year I expect the same. So a breakdown of all the above, filtering out expenses for others in my household.

2008 direct medical expense $3,000

2009 direct medical expense $10,000

2010 direct medical expense $10,000

2010 indirect expense $6,000

2011 direct medical expense $10,000

2011 indirect expense $6,000

2012 direct medical expense $12,000

2012 indirect expense $6,000

2013 direct medical expense $19,700

2013 additional ancillary supplies $6,000

2013 indirect expense $6,000

2013 professional fees and funeral expense $12,000

2014 direct medical expense (est.) $20,000

2014 NIH study out of pocket expense (est.) $5,600

2014 additional ancillary supplies (est.) $3,000

2014 indirect expense (est.) $6,000

2014 professional fees and funeral expense (est.) $18,000

In the end, by the time I pass away, I will have spent out of pocket about $159,300 I would not normally have spent in this decade of my life. Add this to the $1,300,000 or so in billed medical services my health insurance carrier has covered, and whatever value one cares to assign to the services I expect to receive at NIH.

So, yeah, cancer is expensive. I suppose any serious illness must be, but this is something of an accounting for what it has taken to buy me the six years of life I’ve managed to eke out since first being diagnosed in April of 2008. Without the immense social privilege I enjoy in being white, male, highly educated and well-employed all my working life, there would have been a lot less money spent and a lot less time eked out by me.

I’m still here, but I’m a damned spendy dude.

4 thoughts on “[cancer|personal] How expensive is it to sicken and die?

  1. skiffy_grrl says:

    Dang. Makes you wanna become a meth dealer, just to make ends meet.

  2. Monica says:

    Hi Jake,
    I wonder if you have checked into medicare, compassionate allowances list for your health insurance? I bet you would qualify. By the way, I read your blog everyday and I wish good thoughts your/your families way everyday. Even if you don’t believe in “miracles”, it is my hope that there will be one for you!!! Thank you for the interesting blog. Thank you for the pictures as well. Love them!

  3. Dave Raines says:

    Making you a Self-Directed Patient Spendy Dude. Not a bad thing, though I wish it could be otherwise.

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