Column: My health insurance nightmare and what I'm doing from now on (2024)

Editor’s note: Ivy Austin starred in the Broadway musical “Raggedy Ann” years ago, was a regular on “A Prairie Home Companion” and “Sesame Street” as the voice of “Hammy Swinette,” among other roles. (Full disclosure: Ivy and herpartner, R.D. Rosen, author of a host of heralded books —“Such Good Girls,” “Buffalo in the House”and“Strike Three You’re Dead” — arefriends whom I stay with when shooting in New York instead of blowing public money on a hotel, so I guess Ivy is a NewsHour funder, albeit small-time.)

Recently, when I was in town, Ivy was sitting impatiently on hold for 27 minutes, waiting for a response to the simplest of health insurance questions: How much was an elective procedure going to cost her out of pocket? While on hold, she began chronicling the saga, which I continued to overhear as it painfully continued to unfold over the next few days.

It was so unremitting, so time-consuming, so surreally frustrating that I asked her to share it with the Making Sen$e audience. I also asked health care expertElisabethRosenthal,author of “AnAmerican Sickness: How Healthcare Became Big Business and How You Can Take It Back,” to weigh in on Ivy’s ordeal. That post will follow soon.

Meanwhile, here’s Ivy’s story, offered with the conviction that she is far from alone. Please let us know if you’ve had similar experiences. We plan to publish excerpts from the responses we get.

— Paul Solman, economics correspondent

Let me say at the outset that I am trying my best not to get sick — from our health care system.

I’m a 59-year-old white woman. I don’t know if you’d call me middle class or upper-middle class, that’s all debatable in this economy. I’m a freelance performer and producer — so I don’t have the privilege of receiving a prime PPO health plan from an employer. For much of my career, I got health care coverage through the performing arts unions, but these days my income is spread across several areas, and I no longer earn enough income to be covered by unions. As a result, I have to go to the marketplace.

I have had a plan through Empire Blue Cross Blue Shield for a few years. And because I’m a relatively healthy person, I see my plan as one for general maintenance, the occasional specialist visit — and it is there in case of a, God forbid, catastrophe.

Like the rest of the freelance world, I pay a monthly premium. In my case, the kids are grown, I am no longer married, and a monthly payment of $577 seemed reasonable. My individual deductible is $2,250, and my maximum liability is $7,150. Of course, this does not take into account copays and bills for services that exceed contract prices.

This spring, I had a brief scare with my eye. I saw some flashes of light, and I made an appointment through the ophthalmology department at the renowned New York-Presbyterian Hospital, formerly known as Columbia. Empire Blue Cross Blue Shield has a contract with the hospital, which was the major reason for my signing up with them.

I wish I had read Elisabeth Rosenthal’s advice before my appointment, because feeling a bit frightened about my eye, I just followed their instructions. I was shuffled from test to test and figured, OK, they know what they’re doing. All the tests were relatively short and, medically speaking, unremarkable. I met with the specialist. When he saw that I was a healthy person, he realized they put me on his patient list because this was seen as an eye emergency. He described himself as the “pancreatic cancer doctor of the eye” and told me he was not the appropriate doctor for my problem. And so he told me he would take a look and get me out of there as quickly as possible. After the exam, he said, “You’re fine. Come back in a month. I’ll set you up with a more appropriate doctor. He can also check your glasses prescription.” He also mentioned a tiny freckle in the back of my eyeball and said, “There is absolutely no problem. What you have is totally benign and you should never worry about it again.” And I was out of there.

Shortly thereafter, I saw that my insurance had been billed for $820. The doctor had put in for an extended visit.

READ MORE: Why the U.S. pays more for health care than the rest of the world

I called the hospital to ask how I could possibly have been billed for an extended visit. “This is actually a private practice,” I was told. “I know we’re called Columbia Ophthalmology, but we’re really not part of the hospital. Each doctor can bill however they want. If you don’t think you had an ‘extended visit,’ you’ll have to take that up with the doctor.”

You know what? I did not take it up with the doctor. I just figured that my eye was OK, counted my blessings, and figured that whatever I paid would go towards my seemingly endless deductible.

I returned for a follow-up appointment, this time with doctor number two. And I also needed a prescription for glasses. Once again, I’m hustled through a maze of tests. Now they’re retesting my optic nerve — but my optic nerve is fine. I should have said “no” or asked, “Why are you doing this? It’s only been 30 days.” But I didn’t. Next, as I requested, they put me in a room for an extensive exam for a new prescription. I would say I spent a good 20 minutes with him and felt confident that I would see clearly again.

Now I go to a new room to meet doctor number two, who looks at my eye and says, “You’re fine.” But he comments on the freckle on my eye, which I have been told never to worry about again, and says, “Oh I think we should take some photos. Do you have time to do photos now?”

And I’m thinking, ka-ching, ka-ching. I said, “I was already told there’s nothing wrong with this. Why do you need photos?”

“They would be good to have, he said.”

“Do I really need these?”

He kind of giggled and said, “You can do it the next time you come in. Go make an appointment for another follow-up.”

You know, you feel so vulnerable — like you’re supposed to say yes to everything they put on your plate. At least I didn’t fall for that one.

For that visit, my insurance was billed $900.

I’m embarrassed to tell you I forgot to take my new prescription when I left. I called the next week, kept being shuttled from person to person, four or five phone calls in all, and nobody would send the prescription. What exactly was going on here? Finally, they put me through to the doctor’s office, and the assistant said to me, “To tell you the truth, the guy who did your exam for the prescription, he’s just in training. I can tell just by looking at it that it’s not accurate. I have worked here for 13 years and would never recommend that you use this prescription.” Yet, they still had the nerve to bill the insurance for the exam.

But at that point, you’re just thanking God that there’s nothing terribly wrong with you, and you swallow it. That’s the bottom line. I’m healthy, I’ll just shut up and move on.

OK, second set of encounters. About two years ago, an endocrinologist told me that I had osteoporosis. She recommended two different treatments: either Reclast, a once-a-year 15-minute infusion or, preferably, Forteo, a daily injection. But with Forteo, she said, “It’s going to be tough for you to get insurance to pay for it, because you have to prove that other drugs have not worked.” So I called my plan. For a 90-day supply of Forteo, the price was $4,206. I guess I won’t be doing Forteo, I thought. I asked her how much the Reclast infusion would be. “Well, I can’t really tell you that. But what I can tell you is that this is something where you don’t have to prove that other drugs have not worked. They bill your insurance for a hospital procedure instead of a drug,” she said.

Oh no, I thought, I haven’t even cracked my individual deductible. Now we are talking about the hospital deductible, and I have to spend $7,000 before they’ll even consider covering any of this. She gave me the number for the infusion center to find out how much it would cost. I wanted to get the contract price between the hospital and Empire BCBS so there would be no surprises. And this is where the real odyssey began.

I called the infusion center. They passed me around from person to person like nobody’s ever asked how much this procedure costs. Finally they put me through to a manager. He said he understood the situation and would call me back. I never heard from him.

READ MORE: Column: 6 questions to ask at every doctor’s appointment

So I went on the Columbia-New York Presbyterian website. It says hospitals are required by law to make available information about their standard charges, items and services provided. I called the number that applied to me: the patient access department. I speak to a woman, and she says, “Oh no, I realize they have my number listed online, but that’s not my department.”

I was passed from person to person to person. No one could give me a number. Twelve days of phone calls. I decided to once again call my doctor’s assistant.

“You’re my 21st call in the past 12 days,” I said, “and absolutely no one at your hospital will give me the price of this procedure.”

“I’m not surprised,” she said.

I was then told by someone else not to worry about having to satisfy my hospital deductible, because they would code this as an outpatient procedure. But when I called the hospital, they told me they really didn’t know how the procedure was billed. “There is no guarantee of coverage,” I was told, even when I gave them the insurance code given to me by one of their colleagues.

There had to be some sort of patient advocacy program, I figured. I did eventually find someone who said to me, “Well, this is the last stop, the place people call when they’ve exhausted all their resources.” She gave me two more numbers to call. And I called. And I got nowhere. The next day I called back the advocacy number and said I’d called all these numbers that they’d given me — to no avail. A new person was put on the case, a lovely woman named Julie, who stuck with me for several more days.

She began taking this around to different departments at the hospital. We would check in periodically, and she would say, “I don’t get it. I don’t get it. Nobody will give me a price.”

READ MORE: Column: 5 questions to ask during your hospital stay

It’s true that each insurance provider has a different contract price for a service. I have Empire Blue Cross Blue Shield. Maybe their contract for a procedure is $3,000, whereas another insurer might have a negotiated price of $2,800. But Julie could not understand the secrecy inside her own hospital. “I used to work in radiology,” she said, “and we had a list of procedures and contract prices between the hospital and every insurance provider.”

I tried to no avail to get the contract price from my insurance company — another five or six half-hour calls — but they would not give me the information either. My own insurance company, whom I pay monthly, wouldn’t tell me the price!

Finally, call number 25 or 26, Julie got back to me with an answer. The cost of a vial of Reclast at the pharmacy? Anywhere between $60 and $100. The estimated bill for a 15-minute infusion of Reclast at New York-Presbyterian? $9,735! Any guarantee of coverage? No. Guess who canceled her procedure?

After calling my insurance company and giving them the procedure code of my behalf, the patient advocate confirmed that I was still liable for $800 towards my personal deducible and $5,000 towards my hospital deductible and that the hospital would not be able to determine how they were going to process this charge until after the procedure. (When I researched prices across the country for a 15-minute Reclast infusion, they ranged from $1,000 to over $15,000. There was even a case in South Florida where the insurance was billed for $20,000.)

All I had wanted to know was my financial liability. Who wouldn’t? And after 25 or 26 phone calls plus another five or six to my insurance company, no one could tell me if any or all of that would be covered.

I had two other unfortunate experiences, but I’ll throw only one of them into the mix because it also has to do with the price of drugs.

I take a very, very small dose of a common medication. Last year, my copay for the generic version was $15 a month. Empire Blue Cross Blue Shield kept bombarding me with reminders to sign up for home delivery through the insurer’s service, Express Scripts, or I was at risk for losing coverage.

This March, expecting the usual $15 copay, I ordered a 90-day supply of these generic pills. I hopped online to see what Express Scripts had charged my insurance — $436.10 against my deductible! Apparently, I no longer had a separate pharmacy deductible, and these purchases were now rolled into my individual medical deductible. Worn out from dealing with my insurer, I let it go, as I knew I had to exhaust my deductible before receiving any benefits.

Months later, I had no more refills and returned to the doctor and told him what happened. He was not at all surprised. He said, “Look, I’ll put the Rx through Express Scripts, as the company insists. But go home, call Wal-Mart and Costco. Because a lot of people who have no insurance go to those places and do very well.”

It was mid-afternoon when I got home from his office. At 7:30 the next morning, there was already a charge on my American Express from Express Scripts. This time it was for $464.33. Outraged, I emailed them and said, “Cancel the order immediately.” They wrote back that canceling the order would be impossible.

I wrote back that I was going to the media with this. Shortly thereafter, I received a long apologetic email saying that would be sending me a return label; just take the drugs and send them back. I called American Express and immediately disputed the charge, so I would not be responsible for it. I then went to Costco and picked up my 90-day supply of pills for $73.

What will I do differently from now on? Look for a new insurance company? Probably. Do I expect to find a better situation? Not really. I will not go to doctors’ offices for follow-up visits unless I am truly sick or impaired. I will not be submitting to any tests unless I receive a full explanation as to why they are being done and how much they are going to cost. Am I going to worry about the whole “Obamacare” overhaul? You bet I am, because if anything close to what has been proposed goes through, I am in the demographic — between age 55 and Medicare eligibility at 65 — that’s going to get slammed. And I’m going to try to not get sick.