A few months ago, all I knew about glaucoma was that it was a disease of the eye and, by definition, couldn't be a good thing. I have been wearing glasses since fifth grade and have been tested for glaucoma every time I got new glasses. I was always told that I had very healthy eyes but was near-sighted -- growing up, I didn't know you were supposed to be able to see the kids across the street, but I could read a book.
I found out the hard way that glaucoma was the leading cause of preventable blindness -- and that bit of knowledge was just the start of a disastrous journey through the healthcare and health insurance system.
Think of glaucoma as causing your eyes to act like a kitchen sink whose drain is blocked. In your eyes, IOP (intraocular pressure) can build up from fluids that don't drain properly, causing permanent optic nerve damage and vision loss. That is why someone invented Drano for kitchen sinks and, luckily, optometrists and ophthalmologists for me.
My introduction to glaucoma came when I stepped on my glasses after they fell off my dresser. Swell. I called my health insurance company to see if I was covered. No problem. And a network optometrist/eye glass store is walking distance away. Everything seemed routine until the eye doctor asked me back to take more tests. Turns out I had a bad reading on the glaucoma test for increased pressure. The normal IOP range is 18-21 (mm Hg). My reading was 24 in both eyes. That can't be good, I thought.
At that point, I needed to see an ophthalmologist specialist for more testing. I learned that I was at risk for developing glaucoma. Still no problem. There were eye drops I could take, and the eye clinic I needed to go to was also right down the block.
This is where I began to experience the nightmare known as managed care.
I couldn't get an appointment with the eye specialist without prior authorization from my primary care physician. Two problems: I don't have a primary care physician, and why should I need "authorization" when a certified optometrist in my network referred me to a network specialist right down the street?
Fine, I thought. It was time to get a primary care physician (PCP) anyway. It took me a week or so to get an appointment with my new PCP. Great guy. He basically says, yes, you ought to get your eyes checked out. Now, after this delay, I have to wait a month before I can get an appointment with the specialist for further testing. I am not a happy camper. I have researched glaucoma at this point and found out this isn't good.
I finally got a thorough eye examination and multiple tests with all the latest technology. I was told the eye specialist wanted to see me in a private examination room. I couldn't help but notice that all the staff technicians who tested me were in the room. One of them wouldn't look at me. I saw the equivalent of an MRI of my eyeballs. Where my right eye ball should be all white, it was mostly blackish grey. Severe glaucoma, advanced stage. I had already lost 50% of the use of my right eye and 10% of my left eye. The damage is irreversible, and there is no cure. Scared the wits out of me.
I just took early retirement and was looking forward to enjoying the summer. I am in great health. I work out six days a week. I don't take any medications and haven't needed to see a doctor in years. I feel great.
But the doctor wanted to do laser eye surgery immediately on my right eye, so, okay, let's have the surgery now.
Guess what? I am told I need to have the laser surgery pre-authorized, and that will take another month. In the meantime, I get a prescription for eye drops. What's your pharmacy? I don't have one, remember? I don't take any medications.
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I get my eye drops and immediately get mad. Why do I have to wait for pre-authorization? My specialist, who I just got referred to by my new PCP, says I need laser-eye surgery today.
I began my career designing health benefit programs 35 years ago. I spent my entire career in the employee benefits consulting industry. I know health benefits like Lebron James knows basketball. I call the 800# on my benefit card and ask to speak to a patient advocate and ask for a reason. This requirement for pre-authorization can't be right.
Staying calm, I explained the basic fact: Without laser surgery and prescription eye drops, I will go blind. It's that simple. (The good news is that my doctor says laser eye surgery is successful 80% of the time. There is no cure, but the laser can basically try to open the clocked drain in my eyes.)
I set up a three-way call with my health insurance company and the eye specialist's office to see if I can speed up the pre-authorization process. I make great progress. My patient advocate explains that the health insurer can pre-authorize the laser eye surgery within three to five days if my specialist states it is urgent, and he has said the need is urgent.
But I get a call back from the specialist's office. I have to make another appointment with my PCP to get the laser surgery pre-authorized. I couldn't believe it. I just waited a month to have the glaucoma testing pre-authorized. Now I have to go through the process again?
I get in to see my PCP the next day. He completes a patient history and physical and approves the need for laser eye surgery both in writing and in the health insurer's computer data base. I immediately hand deliver the pre-authorization letter to the eye specialist's office with instructions to fax it to the insurer's UR/Pre-Certification department. This a now a done deal, right?
After receiving no word for a week, I decide to call. No pre-authorization has been requested or approved. Even though I had hand delivered the pre-authorization report a week before, the insurer tells me: "Never got it. Besides, that is not what we needed." I am told a much simpler pre-authorization request, similar to a RX script, is all that is required.
I'm now six weeks into this, but at least I now have someone who knows how to handle the process. He assured me that my PCP's office would be contacted within 24 hours to get pre-authorization (for the third time). Sure enough, the next day I get the call back: I am pre-authorized for both eyes.
I asked why pre-authorization took so long. The answer floored me: "No pre-authorization was actually required in the first place because your eye specialist was already in your network."
Great managed care communications. The actual reason it took so long to get prior authorization for my in-office laser eye surgery was because I didn't need it in the first place!
This is not what I had in mind when I designed the first second surgical opinion programs in the employee benefits health industry
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With both laser eye surgeries scheduled, I began using the eye drops every morning as prescribed, one drop in each eye. The problem was that putting drops in my eye was new to me. My natural reaction is not to put anything in my eyes, so half the time the drops ended up on my cheek instead of in my eyes. My prescription was just a little bottle, with drops that were supposed to be a 31-day supply. On day 21, still awaiting laser eye surgery, I ran out of drops.
I called the pharmacy, which said I couldn't get more drops for 10 days. The pharmacist asked: "What are you doing with the drops?" Like I am selling them on the black market or something. I replied: "I put them in my eyes, but I miss a lot."
The pharmacy called back to say my health insurer still wouldn't cover the prescription, but they only cost $3.99; could I pay cash? Quickest $3.99 I ever spent.
Can you imagine? The health insurer would prefer I go blind rather than spend $3.99 10 days sooner than expected.
The Glaucoma Research Foundation and my eye specialist went out of their way to state how important it is for me to use the drops every day without fail for the rest of my life and to always have an extra bottle handy. Try telling that to my health insurer.
Now the good news. I had laser eye surgery in both eyes, and I have a spare bottle of eye drops -- but don't tell anybody at the pre-authorization department that I am self–insuring my spare bottle.
More good news. Although my peripheral vision in my right eye is shot, I can see straight ahead just fine for now. I will likely need to have laser eye surgery every 90 days on both eyes, one at a time, and use eye drops every day to keep my glaucoma in check and save my vision. (Before Obamacare, I may have been told: You have a pre-existing condition; too bad, but you are not covered.)
The Moral of the Story
The moral of the story is to get your eyes checked for glaucoma. It's simple and painless and not just for people who wear glasses. Anyone who has had a head concussion (which I decided was the root of my problem) should also have their eyes checked on a regular basis for several years. There are no real symptoms in early stages, and you don't feel the increased pressure in your eyes. There are millions of nerve fibers that run from the retina to the optic nerve that send signals to the brain. As fluids build up in the eye, the increased pressure can damage the optic nerve and result in vision loss, which can be sudden and without warning. With regular eye exams, early detection and treatment, vision loss can be prevented.
Who gets glaucoma? Anyone can at any age, but the highest risks include; a family history, diabetes, age 60-plus, severely nearsighted (myopic), extensive steroid users and people of African, Asian or Hispanic descent. Obviously, anyone with high IOP is at high risk, although people with normal pressure can experience glaucoma and vision loss, too.
When should you get checked? Every two to four years before age 40, every one to three years between age 40 and 54, every one to two years from 55 to 64 and every six months to a year over age 65.
As for me, I'm just glad I stepped on my glasses.
Ironically, I had been trying to help Chris Adams, CEO of Ceeable, the recent winner of both the 2015 HITLAB Healthcare Technology Award and NASA Science Award,
to launch a technology designed to help prevent blindness. He asked for my help, and I wanted to do what I could for a great cause. I never thought it would be me in severe danger of going blind a week later.
I want to thank my outstanding medical team, Dr. Alan S Gellerstein (PCP), Dr. Reena A. Patel (optometrist) and Douglas K. Grayson, MD, FACS (medical director and chief of glaucoma and cataract surgery -- Omni Eye Services).
For more information contact The Glaucoma Research Foundation
and Catalyst for a Cure (CFC) based in San Francisco.