I was told, "There are no ticks in California, and you didn't get the rash so there is no way you can have Lyme disease. I will not test you for it, but I'll test you for tuberculosis instead."
... to the offensive and dismissive (this one from a neurologist)...
He said, "Lyme disease is superficial, you are doing this to yourself. I have many patients with similar complaints that I refer to psychiatrists. Now be a good girl and go back to your family doctor and get a referral."
... to actively interfering with other doctor's orders...
A few weeks ago I was told by the on staff doc and the infectious disease doc that they had NEVER heard of rocephin or zithromax being used to treat Lyme, and thought my llmd was a wacko for having me on them. So they told me they refused to let zithro, plaquenil, diflucan, and cifprozil be dispensed with all my other daily meds.
I collected these quotes and another 6 along similar lines in 12 hours (most of them overnight last night) from 2 online lists, with a total combined membership of about 400 people. My guess is they'll keep coming in today (but it is time to hit the "publish" button).
Another common theme that isn't reflected in these quotes that I've heard can be captured by this: "It was all going fine until I told them I have lyme. Then it felt like they couldn't get me out of their office fast enough."
Just how common are these stories? Well, today's blog focuses on a particular brand of loss associated with chronic lyme: the loss of services we have been taught we can count on, including insurance, emergency room access and doctor's treatment.
All of the questions I asked along these lines could have been more specific and gathered information that would paint a more thorough picture. While this should thus be considered preliminary, it none-the-less raises questions about whether there is a pattern of discrimination that we should be taking note of.
Here's the answers to the questions that related to denial of care and coverage:
- 12.4% of the respondents say that they have had an involuntary loss of insurance coverage for a reason other than changing jobs since they've had lyme.
- 46% say they have been denied a claim (or part of a claim) by their insurer that was related to their lyme diagnosis.
- 35.3% say they've been denied care by a medical practitioner or a hospital (including an emergency room) and suspected it was because of their lyme diagnosis. An additional 10.5% say they are not sure if this has happened to them or not.
This last category feels like the most disturbing one to me.
After all, I've gotten to a place of pretty much thinking insurance companies will be insurance companies. They seem to be in the habit of denying claims for all sorts of reasons; we can hardly expect that lyme would be any different. In fact, in California, the denial rate for claims runs 10-20% of all those filed.
So 46% of us getting caught in that at some point is perhaps not all that significant.
However, over 1/3 of us at some point being denied care by a doctor or emergency room is pretty disturbing. And with the "not sure" answers added in, the total is almost 46% of us who may have experienced fairly egregious discrimination.
What motivated me to ask this question was hearing stories (sometimes first hand, but more often through the grapevine) and wondering how much of this was a matter of a kind of urban legend... 3 or 4 people that this kind of thing happened to, and then we all repeat the story so many times that it seems like it is hundreds or thousands of times. And it makes you think, "No, really. This can't really happen that much."
But... maybe it is happening this much. I'm looking forward to a format for doing this kind of social research work where I can do interviews with a portion of the people, and get these stories recorded. And then I'm going to write a damn book about it.
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One good thing about the National Health Care bill is that folks won't be able to lose coverage because of a pre-existing condition. I'm not sure, however, that it will help with the claims denial rate. If anyone has any information about how that will be changing under the new system, I'd be very interested in hearing about it.
In the meantime, I find I don't have a heck of a lot else to say about this.
Finding ourselves in a position of dealing with discrimination based on how we happened to have gotten sick is pretty remarkably disheartening. (Not that discrimination based on race, gender, sexual orientation, religion or whatever else is any more sensible; it doesn't change the fact though that it is crazy making.)
But sheesh. It's hard enough to be sick with an incredibly complicated disease without piling politics and discrimination on top of it. It's enough to make me want to crawl into bed and put a pillow over my head for about a month.
Except I have to get up and take pills. So I guess we'll all carry on as best we can, eh?
I'm going to close with a quote from a physician who does get it:
"In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease." Kenneth Liegner, MD
