Yesterday I was explaining to a "health coach" consultant provided by my insurance company the reasons I've stopped medications and medical care for Cushing's syndrome, likely caused in my case by an adenoma on the right aspect of my pituitary gland that has wreaked havoc with my hormonal controls and immune system.
At one point in the conversation, the health coach asked, "Who's your medical provider?" I paused to figure out what she was asking, as I had just explained to her that I have 13-15 direct medical providers currently and that the co-pays, co-insurance, deductibles, and costs for services above Blue Cross Blue Shield's "reasonable and customary charges" are making it impossible for me to seek further care in 2010.
I asked whether she could explain, and she said, "Your medical provider -- is it Blue Cross Blue Shield or some other medical provider?"
"Ah," I said. "That's precisely the problem."
Our health-care coverage has become a Schrödinger's Cat Test of Medical Provision. In this test, an insurance case manager imagines you in a sealed box shielded against medical decoherence, along with a flask containing a random illness or injury. If the flask is shattered, it releases the illness or injury and your claim can be denied or paid at a reduced rate due to pre-existing conditions or any other number of chaos-theory reasons.
Your insurance company interprets that you are both covered and not-covered right up to the point where your doctor makes a diagnosis and sends you a bill.
Even though I have health insurance through my weekday full-time job, I work a second job to cover the costs my insurance doesn't cover. My second job used to be a full-time job, but I've become too sick to put in full-time hours, so now I'm down to just 55-60 hours a week now.
In the past ten weeks, I've spent more than $6,000 out of pocket to cover the co-pays, co-insurance, and sundry other costs that my insurer doesn't pick up. I owe a bunch of money on top of that, uncountable thousands. I have a flexible-spending account for medical care, but I blew through my entire year's account in slightly less than six weeks.
My "medical provider," Blue Cross Blue Shield of North Carolina, will pay 100% of my co-insurable costs once I've spent $2,750 out of pocket, but it has a strange algorithm for counting out-of-pocket costs. An MRI, for instance, may come with a charge of $5,000, but BCBS determines that only $1,116 of that is an "allowable cost." So 20% of $1,116 is counted as out-of-pocket expense -- the other $3,884 would my problem entirely. According to BCBS's methods of accounting, it's unlikely I'll reach $2,750 in out-of-pocket expenses by the time June 30 comes around. So far, they have me down for a little over $900 for the July 2009-June 2010 year.
When I'm up to it, I call the MRI people or the lab people or the doctor's offices and renegotiate the portion BCBS considers "above reasonable and customary charges." Can you imagine how much time it takes to negotiate with 13-15 doctors' offices, plus labs, plus diagnostic facilities? These renegotiations often come with paperwork in addition to begging, and often you have to get your doctor to fill something out, too -- something many doctors loathe and drag their feet over and have to be nagged to death about. It's no picnic to do all this when you're sick.
I've been blogging here and there about foundations, agencies, and companies that provide patient financial assistance. I learned about these by completing and submitting more than 60 applications for assistance over the past few months. I am ineligible for most programs because I make just a little too much income (I really should quit that second job, but geez ... ). But it's good to know they're out there, and if you or someone you know needs help paying for medications, it's definitely worth the time and effort to apply.
I do receive some assistance from HealthWell Foundation, which provides pharmacy debit cards or reimburses patients for co-pays for medications related to a list of diseases their current funding sources cover. They're covering three of my medications. Check out their list of currently eligible diseases and see whether they can help you or someone you know. Their list changes as their funding sources add or subtract covered diseases, so check back now and then.
I also received some assistance from the Ezra LeMarpeh Center in Israel, which covered the costs for seeing a neurosurgeon in February and would cover surgery to remove the adenoma. The neurosurgeon says he can easily remove the adenoma, but first I'll need to overcome some opportunistic infections that have been taking advantage of my crashed immune system and determine the cause of cerebral spinal fluid pressure that is an obstacle to brain surgery right now. I also need to learn through endocrine testing whether the pituitary adenoma is the primary or secondary cause of my Cushing's syndrome -- it would be futile to remove the tumor in my brain if adrenal lesions/adenomas are running the show, because the pituitary adenoma would just regrow.
Thanks to my "medical provider," the mystery may never be solved and I may never get to the point of having surgery.
Le sigh.
I'm not really giving up; I'm just taking a break and catching my breath for the next Charge of the Light Brigade.
In the meantime, if you know a single guy in Europe who has access to universal health care or health-care coverage, ask him whether he's open to a relationship with a single grandmother with a Schrödinger's cat.