I was lucky enough, after more than two months in the wilderness, to get an appointment with a nephrologist who seemed to be very well-liked by his patients. Sekhnet located this doctor for me, by persistence and almost pure chance. He was not listed as a participating provider in my health plan, but Sekhnet’s call to his office confirmed that he accepted my insurance. The only bad news was that his next available appointment was September 19th, almost four months after the biopsy confirming my progressing kidney disease. I had a call back from his office Tuesday, could I come in Thursday? On Wednesday, the next time my primary care doctor was available, I neglected to get a new nephrology referral, something that is the patient’s sole responsibility.
Thursday I found myself at the nephrologist’s office without a referral. My fault, though somewhat understandable, due to the last minute nature of the changed appointment. I called my doctor’s office and spoke to his service, who informed me he was off on Thursdays. She promised me a call back, but as I ‘d never had a call back from him, I had my doubts. Ten minutes later I had a call back from someone in his office, offering to try to get the referral faxed over. Problem solved, or possibly not.
The problem was, my insurance company requires an Emdeon electronic referral, according to the new doctor’s receptionist. A faxed paper referral won’t be accepted, she told me, though it had been accepted by the prior nephrologist’s office. There was a discussion of back-dating the referral, something I’ve been told is insurance fraud.
“Just to be safe,” the receptionist told me, “let’s have you sign this, to avoid a surprise bill.” The form she gave me stated that the nephrologist did not participate in my plan, was out-of-network, and that therefore I was responsible for paying the full cost of the visit.
I asked what the cost of the visit was and the receptionist told me she had no idea. They cannot tell you the price of any medical service, under Obamacare, until after the service is rendered. It’s a menu with no prices next to anything, the waiter just keeps smiling and tells you not to worry, that you will be billed in thirty days. It’s fucking insane. “Just to be safe,” I thought, and then told her I couldn’t sign a paper saying the doctor wasn’t in-network when he was. I pointed out to Sekhnet, who assured me that she would pay for the visit, if it came down to it, that by signing this, agreeing to pay “whatever”, I was waiving any defense under the recent Surprise Bill amendment to Obamacare. Even though the bill would, indeed, be a surprise.
The receptionist had another idea. Call my insurance company and make the doctor my primary care doctor, he was an internist as well as a nephrologist. This way I wouldn’t need a referral. The call to my insurance company lasted for 29 minutes. There were a series of hurdles and I was placed on hold several times, listening to muzak, the last patient of the day, waiting in the doctor’s empty waiting room, earphones in my ears. Toward the end of this endless call the doctor passed by and I asked if he had any IV valium. He smiled and told me not to worry, he was in no rush.
There followed a discussion of his office location. I told Karen, at the insurance company, that I was at 161 Madison Avenue. She told me I could only see the doctor at his East 88th Street office. I repeated this out loud and the receptionist, who by this point had already hugged Sekhnet twice, nodded emphatically that it was no problem. “Tell her you’re at 88th Street,” she said. I have a hard time with an outright lie, so I said “88th Street, fine.”
I was now at the last hurdle: a three question questionnaire about my reason for switching primary care doctors. The last question was about convenience.
“Is the location of this doctor’s office more convenient for you?” Karen asked me kindly. Not really, I told her. I explained that the doctor I’d been seeing was half a block from my house and that this doctor was located about an hour from my home, but that I wanted to switch anyway.
“Is the location of this doctor’s office more convenient for you?” Karen asked me again, prompting me. I repeated Karen’s question out loud for the receptionist and Sekhnet, both now actively coaching me, nodding like two mad women.
“Yes,” I told Karen, “much, much, much more convenient. Thank you.” She thanked me, the transfer was done, I was able to see the nephrologist.
When the nurse began taking my vitals I heard Sekhnet’s agitated entreaty from the waiting room. “Don’t take his blood pressure yet, he just got off the phone with the insurance company!” I told them both it was OK. My pulse was 57, blood pressure 122/82. I told them I’d become so used to being screwed around by the insurance company that it rolled off me like water off a duck’s back.
The young doctor smiled again when I apologized for being late (it was now an hour after my original appointment time). We discussed my idiopathic membranous nephropathy and he told me candidly that the reason there is not more recent research on the disease, which is not as rare as the lack of research might suggest, is that there is no pharmaceutical in development. The drugs used to treat the disease have been around for a long time. When a new pharmaceutical is in development that drives research. “Death by American Healthcare,” I thought, but nodded thoughtfully instead.
He was indeed a very likable doctor. The upshot was roughly the same as at the previous nephrologist, my best bet was medicine’s only bet: immunosuppressive therapy. He would refer me to the doctor he trained under, who specializes in glomerular (a word I still can’t pronounce– definition below*) diseases like mine. There was no immediate rush to begin treatment, he said, as the disease progresses slowly, but his senior colleague was the expert and would fully inform me of everything I needed to know. We shook hands and bid each other goodbye. Sekhnet was beaming from ear to ear.
“You should keep this doctor,” she told me, “even though it’s inconvenient to get to his office.” I told her I’d think about it. This morning at 9 a.m. he called to discuss the results of yesterday’s blood test. We’ve been playing phone tag since, but it was impressive to hear back from him so soon.
* glomerulus: a cluster of capillaries around the end of a kidney tubule, where waste products are filtered from the blood.