Do you see this?
For this price of this Lexus ES, I can have no more headaches, forever. Or at least, an 80% chance of no more headaches - the success rate of the hospital program I spent this week petitioning my insurance to cover.
Obviously, I'm not paying. My budget on cars and medical care is not $30,000+. That is why I drive a Corolla, ride a used bicycle, and have health insurance.
Maybe you drive a Lexus, but if you are paying for health insurance, no doubt you do that with the idea that you can spend your hard earned money on your Lexus, and when you get sick, the health insurance will cover the cost of your care.
What started as one diary has turned into a small series.
My Own Healthcare Hell
My Own Healthcare Hell Part 2
My Trip to the Headache Clinic
I was hoping to give you two last installments. 1) My insurance came through and 2) I am out of the hospital and all better. Sadly, that's not the case. They denied me on Friday and then we went around and around again until I got a final denial from them Thursday afternoon.
The last week of my life has been very instructive in learning about the health care and health insurance industries from the inside. I work in health care so I thought I knew something, but man oh man, have I gotten an education this week.
Bonddad gave us a few great diaries with economic analyses of our healthcare system (Health Costs v. National Median Income; Health Costs Win and Single-Payer Health: Cheaper, Better and More Efficient) and nyceve brings us new outrages nearly daily. I'm not sure how much good it does to add my own story to the long list of sad stories that are out there, but for what it's worth, here you go.
To start, if you haven't heard (I feel like I do nothing but complain these days), I get headaches. Chronic migraines triggered by flickering lights (TVs, ATMs, CRT computer monitors, CFL lightbulbs, etc.).
I've been bounced around from one doctor and one medication to the next, and most recently, my neurologist suggested a clinic out of state, I fought the insurance to get them to pay for it (which they did), and I went to that clinic for a consult. The doctor who I saw there told me I need to go to the hospital for 2 weeks, and their program there has an 80% success rate of fixing headaches. That's where the story picks up.
I went to the clinic a week ago Wednesday. On Friday, they told me my insurance denied the hospitalization. Should I go home? I asked. No one would tell me.
From the clinic's point of view, if a bed opened up and my insurance gave the OK, I needed to be there THAT DAY. Short of getting a same-day plane ticket, the cheapest and safest thing for me to do was to just stay put.
From the insurance's point of view, who the hell knows. They refused to give me a recommendation one way or another. All I can say is that it became increasingly apparent to me as I spoke with them that if I went back to work, then they would say "Well, you are able to work, so you obviously don't need to go to the hospital."
My insurance would not pay for the hospitalization until we proved to them that:
- I've tried everything else and nothing works
- I cannot live another day without care
- The hospitalization will actually fix the problem
- There are no other alternatives
Have I tried everything else? No. I haven't tried acupuncture or chiropractice or most drugs that exist in the world. I've only been seeing my neurologist for about six months. I've also seen an ophthalmologist for this and had 3 EEGs and an MRI. I've tried a few meds to prevent the headaches (which I think is the solution I need in the end) and a few other meds to get rid of the headaches once I have them. Of those things, nothing worked.
Will I live? Sure. Quality of life is questionnable, but I'm not dying nor will I ever die from this. Unless the insurance company drives me to suicide (JUST KIDDING). They asked if I was going to the emergency room for my headaches. Nope.
Will the hospitalization fix the problem? Most likely. Here's where it gets a bit hairy. The hospital has 18 beds solely devoted to headache patients. The nurses, doctors, OT, PT, mental health specialists, and nutritionists there are all specialized in dealing with headache patients. The program involves IV drugs as well as a lot of patient eduction and other multidisciplinary care.
The doctor from the headache clinic wrote a note home calling for a bunch of IV drugs for me. The insurance had 2 answers: 1) if I just need IV drugs, they can give me that without paying the price of a Lexus to do it and 2) I need to be able to be well as an outpatient, not just in the hospital. They believed that once I got well in the hospital on IVs, that would not prepare me to live a normal life and hold my normal job and still avoid headaches.
Call me crazy BUT I have a hunch that one of the premier headache facilities in the nation would account for all of those things. If a few IV drugs given to me at perhaps an infusion clinic or something at home could take care of me, then why would the headache clinic exist, and why would they need an inpatient unit? And, similarly, if they cannot help their patients be well living their normal lives, why would they even exist?
Are there other alternatives? Sure. There are.
Acupuncture is a route I am going to try. It's going to be difficult to do this as an outpatient. I'll have to leave work for a few hours at a time for each session, and I'll probably need several sessions. This also depends on whether I'm in town or not, since I travel for work. Maybe it will work, maybe it won't. If it will, great. If it won't, the amount of time it will take me to try it out is going to be more time wasted, time that I still get headaches.
Cost: A copay for each visit, probably around $30.
I also plan on getting some glasses with polarized lenses. This might cause me to do something I greatly regret - go to the mall. But, I am willing to go to these lengths to solve my headaches. I'm not sure if they will work, but whatever. I'll give it a try.
Cost: Who knows? $40? I'm not exactly buying designer ones.
There is also the plan to find a preventative med that will keep me from getting headaches. The problem I have with this is similar to how I feel about acupuncture. It is going to take months to do this. It takes a long time to gradually increase the dosage on the type of med that will help my headaches, up to the correct dose. Once I get to the right dose, each med may or may not work. If it works, great. If it doesn't, that's more time and money wasted.
Also, each med might have side effects. The last one had side effects that made me really sick. I am beginning to feel like each new med is a game of Russian roulette.
It'd be one thing if I were trying all of these meds while I wasn't at work (which is PRECISELY what I was going to do in the hospital). That way, when I am at work, I can have no headaches and no side effects and I can be as productive as possible.
Cost: $20/med
The other suggestion generously given to me by the insurance was that I go see a mental health provider. This strikes me as ironic because I do not feel I need to see one, however, I would have seen one as part of the inpatient program my insurance did not want to pay for.
I do not want to give the impression that money is my problem; it isn't. I'm ticked off that my insurance wants to nickel and dime me (or $20 and $50 me) instead of giving me care. I am financially fairly stable at the moment, although it will be interesting to see how the next year or two of my life plays out. I have two loving parents and they are well off and no doubt they would help if I got into a pinch. I also have insurance, which in theory is supposed to pay for my health care. The best help anyone can give me (and yourselves) is to fight to reform health care in America. Our current system doesn't work.
The other thing that irks me was the amount of time it took to ultimately deny me. My neurologist needed to talk to the headache specialist and then to a doctor at the insurance. Three doctors needed to talk, that is all.
Friday around 10am, my neurologist skipped town. She had a day off on Monday and returned to work Wednesday. The headache doctor was at work every day except for Tuesday, as was the insurance doctor. The insurance doctor sees patients in the afternoon (i.e. he's not available to speak on the phone); the neurologist sees them in the mornings. The case manager at the insurance - the one whose job it is to tell me whether I've been approved or denied - goes home at 4pm every day, so if there was a decision made after that, she wouldn't tell me until the next business day.
It took from Friday until the next Thursday for all three of these doctors to actually talk to each other to make a decision. In the meantime, I was away from home, paying for hotels, cabs, and restaurant food, and using sick and vacation days from work. I spent a total of 8 days from the time it took to go the clinic to the time it took for my insurance to deny me.
Next steps: Other than trying all of the routes of care that are available to me, I plan to appeal the denial. It is a mentally and emotionally draining process, but I am going to fight.
I'll also be back to work, so I hope that the insurance does not point to that and say "Well you're obviously well enough to work!" What do they want me to do - purposely stare at a TV until I pass out from pain so I can go to the ER, just to prove that I need care?
I've got an upcoming appointment with my neurologist. The goal is that she writes in her notes full documentation that nothing works, and we're trying everything, and I need to go to the hospital. The more notes supporting that conclusion, the better. (I don't really think this will work, because the neurologist spoke to the insurance doctor for a full half an hour without being able to convince him this week.)
If my appeal is denied, I can submit a complaint to the state insurance commissioner that my insurance is denying me needed care.
I can see this from two points of view. Unlike most insurances, covering my hospitalization is not going to cut into their profits. My HMO is a member-owned cooperative. If one member gets costly care, then there is less in the pot for everyone else - or premiums go up. I hope that my insurance uses some discretion when deciding who gets care because if they said yes to everything (for example, repeat tests that aren't necessary), the premium would go up for me too.
Before you get too sympathetic for my hippie insurance cooperative, there is more to learn. I rode home on the same plane as a few coworkers, one of whom works in hospital billing. I told him my story and he told me that the price quoted to me was about right. $1800-$2000 per night for the room and board, supplies, drugs, and misc procedures and tests. He said billing is done based on your diagnosis. Some diagnosis x number of nights x some multiplier. The doctor's fee (billed separately) is based on their time with you - $130-$250 per day gets you about 20-30 min per day.
THEN he told me that most insurances pay about 1/3 of what a self pay patient pays. So, while I am sitting here wondering how I could ever pay for a brand new 2007 Lexus, my insurance is denying me a used Corolla. What???!!!
He said that poor patients sometimes find special programs to take care of their costs, so the ones who are really screwed are people like me - people with jobs (and maybe even insurance) who have some money, but not the kind of money to buy them a two-week stay at a hospital (the real club med?).
The other outrage is that it isn't right that the patient has so much running around and fighting to do just to receive care. The patient needs care - not a hassle!
I've spent the past week playing phone tag. "Hello, neurology nurse - please tell the neurologist to check her email because there's something in there from the insurance." "Hello, insurance? The neurologist told the nurse who told me that the neurologist didn't get the email." All week long, that's what I did.
Overall, I'm just frustrated. Time is a luxury I feel I do not have. In about a week, a project is going to really pick up at work, and it's going to go fast pace until December. I'm really excited about this project and I would like to be pain-free to do a great job on it and enjoy it.
Another project got jumpstarted last week (a friend stood in for me) and I really care about the customer and the team who is doing the project. I want to give my all to help them. I don't want to be MIA in a hospital, or living the strange lifestyle I am forced to lead in a constant effort to avoid pain.
The insurance wants me to take time to explore every (cheap) route. There's a sure-bet cure waiting for me in the hospital. How many more months of pain must I endure before I can receive care that the insurance will cover? My condition has become gradually worse over the 10 years it's afflicted me. At what point will my pain become so great I am no longer able to work? And when I get there - will the insurance give me care then?
Also - they pull this BS for a headache patient. What if it were cancer? Is this how our system treats the terminally ill, or is it just reserved for those like me, who have lifestyles impaired by health conditions that aren't bad enough to kill them?