28 June 2012
I have a bad SNP. It’s not my fault. Genetic analysis has determined that I got this wayward gene from my father.
However, knowing that celiac disease could be very bad, and having only a big major medical coverage at the time (in 1996, with a $5,000 deductible), I didn’t want to be “officially” diagnosed as celiac. So my doctor and I did the blood test and I changed my diet to gluten-free. Until I had more stable coverage, this was all I could afford to do.
This meant that I was “off the books” as a presumed celiac, and that meant there was no paper trail to deny me insurance based on a pre-existing condition. And there ain’t much more pre-existing than a bum gene, right?
However, this worked against me in the long run. If I were to stay in a hospital, I had nothing to back up a gluten-free meal request — or, worse, gluten-free pill requests. I’ve been told explicitly I wasn’t celiac because I didn’t have high enough levels of anti-gliadin antibodies (never mind the fact that not every celiac does) even though I’d been on a gluten-free diet for years. In fact, I still haven’t gotten the celiac label to stick at my HMO because it is so difficult to diagnose someone who’s been on a gluten-free diet as long as I have, and typically the methods involve making someone very ill. Charming.
In short, I’ve been trying for years to get accurately labeled, and it’s cost time, expense, and quite literal pain and suffering — all because of my fear of being labeled when I had inadequate insurance and could be denied for pre-existing conditions.
In fact, my mother had emigrated to Canada in the 80s, had breast cancer while there, and was afraid to return to the US for fear of not being able to find any coverage at any price. At the time she left, few small US employers offered health care plans, and pre-existing condition exemptions were huge. Over time, that changed, so she returned to the US as a dual citizen in the dot bomb era, now able to find good coverage (partly because the cancer had been long enough ago that pre-existing clauses didn’t clawback that far).
Also, as my friend Kate phrased it, “I’m unbelievably happy, not having to plan major life decisions around benefits packages could change my entire career path.”