When I was in my twenties, I was diagnosed with glaucoma. At the time, I didn’t worry about it. I was twenty-something, busy teaching, having babies, writing a book—and, with glasses, my eyesight was 20/20.
It was only when I moved to Manhattan twenty-five years ago that I began to take the disease seriously. A friend recommended an ophthalmologist who, I was told, was one of the best in the city. He regularly turned up on lists of New York’s star specialists, had an office on Park Avenue, and didn’t take insurance of any kind. Twenty-five years ago, this was unusual. But, my employer’s insurance was generous and paid most of his very high fee.
At my first appointment, I mentioned the early diagnosis of glaucoma. After examining my eyes, Dr. X told me that that I must begin using eye drops immediately. I also should begin making appointments to see him every four months so that he could check the “pressure” on my optic nerve. Glaucoma is the second leading cause of blindness in the U.S. There is no cure, but usually it can be controlled with eye drops. “It must be watched carefully,” said Dr. X.
Over a period of years, I saw Dr. X regularly, and continued to use the eye drops, morning and night. At least once a year he prescribed a “field vision test” to check whether my peripheral vision was degenerating. Meanwhile, an appointment with Dr. X killed an afternoon. He kept his waiting room full. And while he had many minions (young assistants who seemed afraid of him), he was a solo practitioner, so the line moved slowly. He once explained to me that he preferred solo practice because, “I don’t want anyone looking over my shoulder.”
When I changed jobs, and no longer had the extremely generous insurance, I began seeing Dr. X less frequently. I recall one occasion when he berated me because I hadn’t been in for nine months. “Do you want to lose your eyesight?” he demanded. “Don’t you realize that you have to do what a doctor tells you to do?” Clearly, I was being labeled a “non-compliant patient.”
From time to time, I would try another ophthalmologist for a year or so. Typically, they were less expensive, and would prescribe slightly different eye drops. They, too, put me through the tedious field vision tests on an annual basis, and their waiting rooms were also full. Usually I wound up going back to my “world class” Park Avenue doctor convinced that, given his utter lack of personal charm, he must be very, very smart. Otherwise, why would so many people pay so much to sit in his waiting room?
About six years ago, when I began writing Money-Driven Medicine, Dr. X and I finally parted ways. When I mentioned the book, and my interest in health care reform, he exploded. He felt strongly that medicine should be driven by “free market competition,” and expressed contempt for middle-class Americans, who complain about their doctors’ bills. “They take their children to Disney World,” he said bitterly, “but then don’t want to pay a decent price for medical care! Do you know how little money an eye surgeon makes in Canada?!”
He was in such a rage that I decided never to go back. Since then, I’ve seen two other ophthalmologists. The first one, who I’ll call Dr. Y, told me that in addition to glaucoma, I was also suffering from acute macular degeneration—a disease that will cause many members of my generation to go blind. When I asked why Dr. X had never diagnosed it, he explained: “he didn’t have the right equipment.” Dr. Y ran a group practice, and they did have more equipment.
After a few years, I found a physician closer to home. Lots of equipment. An impressive HIT system that he had designed himself. But then his book-keeper began double-billing my insurer who, in turn, froze my insurance. It’s not clear that the over-billing was intentional, but it was very clear that he did not want to give the money back to the insurer. As you can imagine, this caused something of a rift in our relationship. (I’ve never had such problems with other specialists, but somehow my efforts to find an eye-doctor in Manhattan have been star-crossed.)
Ultimately a friend who is an M.D. recommended a new ophthalmologist, a young man from India who I actually liked very much. Dr. Z was funny, somewhat iconoclastic, and very candid. He could write me a new prescription for eye-glasses, he said, but the difference would be very slight. I would be wasting my money. The second or third time I saw him, Dr.Z asked me a question point-blank: “What makes you think you have glaucoma?”
I was stunned. Because over a period of twenty-five years five or six different physicians had been treating me for the disease??
“Look,” he said, “Glaucoma is not my specialty. But it is a progressive disease. What I can’t figure out is how you’ve had it for so many years with so little progression.”
“Because the eye drops worked?” I asked.
“Maybe,” he said. “But I’d urge you to see someone who does specialize in the disease, and have the doctor you saw for two or three years send her the records of your visual field tests over time. He gave me a card, and urged me to call for a second opinion. It turned out this doctor wasn’t available. And Dr. Y. had retired, so I never got the records.
Still, I thought about what Dr. Z had said and some months later did visit a glaucoma specialist. I asked her: “Is it possible I don’t have glaucoma?” I explained that I was no longer using the eye drops as regularly as I probably should.
After examining my optic nerve and checking the pressure (which was surprisingly low), she said: “It is possible that you don’t have glaucoma. Sometimes it’s over-diagnosed. But I’d like to put you on different eye drops, and run some tests.” (For information on how glaucoma continues to be both under-diagnosed and over-diagnosed click here. See also this AHRQ study comparing the effectiveness of various ways of screening for glaucoma and the harm caused by over-diagnosis.
Another field vision test. As usual, I passed with flying colors—or at least my right eye did. She showed me the print-out; I didn’t do as well with my left eye. Perhaps I was getting tired at that point in the exam.
So we scheduled another field vision test. This time, she would check the left eye first.
That was yesterday. The left eye looked very good. The pressure is extremely low. This could be because I’m using the new eye drops. “It’s a good product,” she said. “The only problem is that I’m not at all sure you need it.”
“You really think I don’t have glaucoma!” I asked.
“Well, I didn’t want to say this before, but you were diagnosed in your twenties, and after all of these years, the disease hasn’t progressed? Give me a break!”
Still, she wants to be cautious. I’m supposed to stop taking any eye drops for six weeks. Then I’ll go back, she’ll check the pressure, and do another field vision test. If everything looks good, I won’t use eye-drops for six months. Then she’ll check me again.
“This is a disease that progresses very slowly,” she assured me. “Nothing radical is going to happen in six months.” She also made it clear that the decision was up to me. If I wanted to go on using the eye drops forever, I could. “But it’s never a good idea to take a medication you don’t need. And I’d like to get you out from under this diagnosis, if I can.”
I’ll report back and let you know what happens. But at this point, I’m fairly certain that I don’t have glaucoma. From time to time doctors have expressed some surprise that I did so well on the field vision test, and there is no history of glaucoma in my family. None of this is conclusive.
But if I had never met the young doctor from India, I probably never would have even asked the question. “Most doctors are not going to tell you that you don’t have a disease that other doctors have diagnosed,” my new ophthalmologist explained. “For one thing, what if they took you off medication and your eye sight deteriorated? You might sue them.”
A very straight-ahead and cheerful middle-aged woman, she doesn’t seem worried about being sued.
As for doctor Z, perhaps in India, if a patient isn’t sick, you simply tell him that he’s not sick? An American patient might be offended. Maybe Indian patients don’t mind?
Maggie Mahar is an award winning journalist and author. A frequent contributor to THCB, her work has appeared in the New York Times, Barron’s and Institutional Investor. She is the author of “Money-Driven Medicine: The Real Reason Why Healthcare Costs So Much,” an examination of the economic forces driving the health care system. A fellow at the Century Foundation, Maggie is also the author the increasingly influential HealthBeat blog, one of our favorite health care reads, where this piece first appeared.