One from the Don’t Worry About It Department:
My urine had been foamy. Not just bubbles, but real foam, like soap suds, or the head of a draft beer, or the top layer of a root beer float, to be most precise. The urologist laughed when I mentioned, in passing, that my urine was foamy. “Your urine is foamy?” he said with a big smile, like I was pulling his leg.
The first nephrologist told me I had permanent. irreversible scarring on my kidneys and would need a lifelong regimen of drugs, and regular visits to his office, to maintain the functionality of my kidneys. When your kidneys go you die, of course, but, then again, whatever you do, you die, so there’s that, plus, I’d already lived to sixty, no mean feat. The doctor was philosophical.
He made his dire diagnosis with certainty, without having to run any tests, merely by noting the swelling from my knees to my ankles, bilateral edema, and, of course, the foamy urine, proteinuria. The foaminess of the urine turns out to be an indication of protein being passed in the urine. Normal kidneys do not allow protein to pass through their filtering system into the urine, the body has more important uses for protein than pissing it out.
Fortunately, the medical insurance I had at that time refused to pay this doctor, so he cancelled our follow-up appointment, when actual tests would have been done. I found another nephrologist and had tests done.
There was a lot of drama the next year or so, and three or four other nephrologists, the second discovering elevated levels of anti-PLA2R autoantibodies in my blood work. The presence of these antibodies correlates highly with the presence and progression of a kidney disease called idiopathic membranous nephropathy. That doctor, though I liked him, was not on my new insurance plan, so I had to take his paperwork to another nephrologist.
The third one argued vigorously about the meaning of “idiopathic” (which she eventually had to admit does mean ’cause unknown’) and urged me to undergo an immediate kidney biopsy and begin the twelve month immunosuppressive protocol without delay. The kidney biopsy confirmed that I had this rare disease with the unknown cause. The good news was that the biopsy also showed no scarring of the kidneys, organs which, in my case, continue to function in the normal range.
The last nephrologist I saw recommended that I have a short course of treatment borrowed from cancer treatment, infusion of a powerful immunosuppressive agent called Rituximab, or Rituxan. It is tolerated well (far fewer debilitating side effects) and requires only two infusions, as opposed to the twelve month course of infusions that has long been the standard treatment for this disease, a regimen that includes intravenous steroids and other powerful, potentially harmful chemicals designed to shut down the immune system, every month for a year. Rituxan is expensive, the doctor told me, but apparently my health insurance in 2017 would cover it.
When I showed up for the first round of infusions I was asked to sign a paper that included a paragraph where I stated that I’d been informed of the price of the treatment and agreed to pay any balance the insurance company refused to pay . I asked the woman at the desk what the price of the treatment was. She said she had no idea, and no way to find out, actually. I asked her how I could possibly sign off on the paragraph I pointed to.
“Cross it out, baby,” she said nonchalantly, and I did. “They’ll tell you the price upstairs,” she told me, photocopying my papers.
All they knew upstairs is that Rituxan is very, very expensive.
A few months later I learned the price when the insurance company sent me the EOB (everybody in America knows what an EOB is– Explanation of Benefits). The EOB stated that the list price for the two small bags of immunosuppressive infusion was $88,000. My insurance company had paid a small fraction of that, maybe 10% or 15%.
Since the infusions a year ago my blood and urine work has been heading steadily in the right direction, though my urine continues to be foamy, indicating that it still contains protein, and the numbers are still far higher than normal. The last time I saw him the nephrologist suggested that, just to be safe, we do another round of Rituxan. I asked if we could hold off on this, as I was just getting back toward 90% of my health and fitness levels from before the infusions had induced persistent asthenia (weakness, lack of energy). He told me there was no harm to wait, that we should check in three months from now, which is currently about three weeks away.
It suddenly occurred to me, since I have only a few weeks to select my health insurance for 2019, that I ought to see the nephrologist before the enrollment period ends, to determine whether he still recommends another $88,000 round of treatment. If so, I need to be sure the insurance I buy will cover it. In 2018 I’m paying a fraction of what I paid in 2017 for my current insurance, based on my 2017 income. My current appointment, December 18, is three days after the deadline to purchase health insurance for 2019 or be ineligible for a year. Fair is fair. He had no earlier appointment available but would discuss my blood and urine test results on the phone as soon as I could get them done. I had them done last Tuesday.
Of course, none of this is anything a patient should have to worry about, which tier of the health insurance hierarchy he or she is on and what medicines and treatments are covered on each tier. This is a profit-driven American sickness. Under the Affordable Care Act, the tier of medical insurance you may purchase is based exclusively on your income. Your income level determines the level of medical care you may buy. To purchase a QHP (“qualified health plan”) like I had in 2017, your income must be something like a minimum of 200% of the official poverty income. If your income is only, say, 167% of that number, you will be required to buy what is essentially pay-as-you go Medicaid. Medicaid famously does not pay for cutting edge treatments when far less expensive old standbys are available.
In other words, if you want to pay 10% or more of your annual income for health insurance, to ensure you can continue a medical treatment for what used to be called a “preexisting condition”, you are prevented by the ACA from doing this. You must have an income sufficient to purchase a QHP. If your income says you are too poor to do that, well, whose fault is that?
I no longer get bogged down in the philosophical issues . If you are poor enough to be subject to a law that singles out poor people for a little extra nonconsensual sex, well, whose fucking fault is that? I can howl at the moon, or figure out the odds of getting the medical treatment I need, to hopefully qualify for insurance, at more than ten times the monthly premium I am paying now, that will pay for a treatment that will only weaken me for three or four months, instead of for a year or more.
I called my insurance company to find out if the well-tolerated cancer drug was in my plan. They really couldn’t say, beforehand, whether Rituxan is covered under my current plan. The first rep told me it did not appear to be covered under my plan. I gave her a svelte version of my rap about corporate “personhood” and the psychopathic self-regarding myopia of such “persons”. She was sympathetic (I find most people are, if you remain calm and speak very succinctly) and asked me to wait for a rep who could actually answer my question. The second rep was also sympathetic, but not the expert in pre-auth I took her to be. She was not sure why the first rep had connected me to her. I told her I wasn’t sure either, though it had been very nice talking with her. She asked me to please hold for a third rep, someone who could definitely answer my question, hopefully.
For once the muzak was not oppressive. It was an anodyne little jazz combo, led by a guitar, playing a completely innocuous, if uninspired, loop of jazzy blues in G. Better than most of the nerve challenging, blood pressure spiking shit the Mengeles out there use for hold music.
The third rep was the most sympathetic of all, and only 40 minutes into my call. She told me that Rituxan was clearly on the list of drugs not covered by my plan, but that, if the doctor received a pre-athorization, based on medical necessity, it would be covered. Although, sad to say, she had to check with another expert to be sure and hoped I wouldn’t mind holding. “In for a penny, in for a pound,” I said cheerfully.
Fortunately, the little jazz combo was still playing that short bluesy loop in G, and I nodded along and made marks with ink, this time with a brush, for about ten minutes, at which time the third expert was on the line with a fourth. They gave me the number the doctor needed to call at the third party that handles such things for the insurance company. Tell the doctor to press 1 for “preauthorization” and then 5 for “medical necessity”. If the doctor can prove Rituxan is a medical necessity, your insurance will pay for it. If not, take what is behind door number two.
After submitting a few vials of my blood, and a small screw top jar of my foamy urine, I walked over to the doctor’s office where I left Deirdre with a note containing the pertinent numbers from the paragraph above. She assured me she would follow-up once the labs came back, and that I would get a call from the doctor about the test results.
One last thing for me not to worry about. Unlike in December 2016 when I was able to merely state my income, for purposes of paying a premium ten times more than I’m paying now for insurance that covered the treatment I need, there is apparently a brand new requirement. To purchase a QHP you must submit a copy of your 2017 tax filing, showing the income that qualifies you to buy a qualified health plan. I’ll cross that fucking bridge when I come to it, yo.
 The practice of trying to make the patient pay the balance, the difference between the rate the insurance company has agreed to pay and the sticker price billed by the provider, is called ‘balance billing’, apparently. Of course, if a provider accepts insurance, the negotiated rate is all they are entitled to be paid. Balance billing, while not ethical, proper or strictly legal, is common. Of a billion balance billing bills sent out, I’d imagine many millions are paid by conscientious consumers who don’t want to damage their credit rating. Columbia Doctors recently sent me this kind of bill for $250, only 900% more than I actually owed for the visit. Balance billing, you dig. They can do this because there is no government agency in New York State that one can really complain to about this common practice. Caveat emptor, bitches!
 Though it has not been easy to come by this fragile new dispassion. You can read some of my selected struggles with this merciless American health insurance and pharmaceutical industry-authored scheme here.