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The Cost of Hairy Cell Leukemia

Posted Aug 19 2009 6:19pm
I reviewed all my insurance statements since my first doctor's appointment that led to my diagnosis and treatment for HCL. The total diagnostic cost billed by the doctors was $19250. Add the "virtual" cost of the NIH provided chemo at $20,000, the 1-month BMB at $1500 and the follow-on CBCs at $2000 along with $2500 for "progeny insurance" and the total is around $45260.

The insurance negotiated diagnostic costs came in at $4120 -- a $15,130 savings vice the doctor charges.

Given that I haven't submitted my "progeny insurance" claims yet, my total out-of-pocket (OOP) expense thus far is $2695. A savings of $42565, which may increase when I submit the other claims. My total OOP expense could be as low as $195. Not bad. Say what you want about insurance companies, but I'm grateful for mine. Without their negotiations and coverage, HCL would have left me bankrupt.

What I don't understand is why the initial doctors costs are so high compared to the negotiated costs. The variance between insured negotiated costs and uninsured non-negotiated costs is beyond reason. That the people who can afford it the least are left paying the most when their health turns for the worse is immoral given the large arbitrary cost fluctuations that exist between the insured and non-insured.

Following up on my last blog, my ALT and AST levels after going off Clonazepam were very good -- 24 and 28, respectively, so I've switched from Clonazepam to Gabapentin, which doesn't metabolize. I go in for my 4-month CBC tomorrow. I'll post the results once I get them.

- Jon
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