Just went to see my medical specialist. I have a chronic disease, which so far has remained unresponsive to every treatment. It took almost two years of personal dedication and insistence to finally receive a diagnosis. I almost gave up. It took two years of talking with doctor after doctor, running test after test. My goal was to begin some kind of treatment that would give me hope. The disease has been getting worse and worse, all this time, and I am nowhere near healthy (the disease I have does not have a cure). Today’s story is just about what it took to get a diagnosis. Because, a diagnosis is what would allow me to start the medications that might put my disease into a halted state; what they call remission.
From the start, I knew that something was really wrong with me. I was dealing with so much body pain, I could hardly cope with life. That has never been me. I have always been a strong and competent woman, doing things that most people never consider. I’ve always taken pride in my ability to adapt and overcome. I am smart. I’m funny. I’m strong. Before this point in my life, I never had to go to a doctor for more than an out-of-control infection, or the odd broken bone. I used to snowboard.
So up till this point in time, my experience with the medical establishment had been more or less, “Take these pills till they are all gone, and then come back in a few weeks and we’ll take out the stitches.” I don’t go back to get the stitches out. Ever. I can do it with a sanitized pair of nail clippers. A gal’s gotta take care of herself. My husband just rolls his eyes.
I have two points to make in this guest blog. The first is about the terrible nature of care for those who are chronically sick, and stuck in a confusing and combative insurance situation. I don’t mean to make a political statement; though I have my own (rather independent) leanings. I don’t believe in falling in line with any party line. This election, I’m voting my conscience, not with the hope of winning. But yes, I’m on Obamacare—which I thought was a good idea in the past. And, being financially woeful, I am on the $0 copay.
Here's what you didn’t know about the $0 category: Nearly every medication you get prescribed will be prior authorized, substituted, or denied. Sure, your doctor prescribes an easy anti-biotic for that nasty cold; you’re probably fine. But if you have something chronically wrong with you, and your doctor wants to start trying stuff to see what works—good luck.
So, your doctor prescribes something, and your insurance is doing what they always do (being a pain, and giving you ten hoops to jump through before they fill it), but you are in a desperate situation. You are willing to pay out of pocket, just because you are so desperate. The pharmacy will not allow you to pay for it. Seriously. In the good old U.S. of A., because you are in that $0 category, they have made it illegal for you to pay for your medication that your doctor has prescribed to you.
It’s not fiction. That is a fact.
My female intuition: because it looks bad, statistically, when the system is so broken the poor people are doing what the government promised they wouldn’t be doing: shelling out money their insurance company ought to. Been there, done that. Metaphorically, of course, because when I was there, they delayed filling (because a delay isn’t a denial), and wouldn’t let me pay. I went home, sick, without any medicine.
One little bonus tip here, just because I’m nice: Your insurance company publishes a rule book for what they need in prior authorizations. So if you’re a smart girl (or boy, or man, or whatever), you do all the fact checking before you go see your doctor, just like I did. I talked with my doctor about what she could actually prescribe. So, I got a smile on my face for doing all my homework, and the doctor was nice enough to play by the insurance company’s rules. The next day, at the pharmacy window, I discovered the insurance company doesn’t actually abide by their own rules. I was denied a medication, after my doctor responded to the prior authorization request. Why?
They couldn’t tell me. And believe me, this woman [my thumbs are pointed at me now] is the definition of determined. I called and called (the automated service is designed, I’m convinced, to be an exercise in futility) and finally talked with someone who was a manager of some sort. I asked her to look at the rule book that I was looking at. After all, it was the rule book that her company put out. Didn’t I fit every requirement for the medication? Well, yes I did. But, someone had already denied the medication, and there was nothing that person could do to reverse the decision. And here is what I could do about it: I could always take it to appeal.
The appeals process is a joke. When they deny a medication out of hand, even against their own rules, the only accountability is an appeals process that takes up to a year to complete. So, if you are sick now, and you are prescribed medication for your sickness, and you go to the pharmacy, and the insurance denies the claim—and you are in the right, and they are wrong—you can get that medicine in a year.
I have become convinced that the $0 state sponsored insurance is about denying care. We the public were sold a promise that was just too good to be true. I’m not looking at statistics here, or scientifically building a case. I’m just talking truthfully about my own experience. I don’t feel like I’m in a position to whine about something that I’m not paying for, but I do think that the American public, who is footing the bill for my medical care, should be aware of what they are paying for. I think we got robbed.
Here is my second thought about chronic illness in the state insurance game. I have one more item that I would like to talk about. I’ve been assured that my identity will be safeguarded, otherwise I wouldn’t write about it. It has become politically favorable to distain the use of opiates in the medical community. There has been a lot of abuse, I’m told, and I’m sure that there has been. But the hammer has come down on the medical establishment, and now any opiate therapy is functionally equated to drug abuse.
Factually, the international medical community, for thousands of years, has been prescribing opiates as effective symptom control for patients with high physical pain. Educate yourself. And if you are a medical professional, please remind yourself of your own science; and don’t get swayed by political faddishness.
This disease is literally eating away my body. With this disease, the only effective pain relief I get is from opiates. And, it’s not a mystery. When it comes to nociceptive pain (the pain you feel because your body is being damaged), there is no medication more effective than opiates. When I first started seeing doctors to try and figure out what was wrong with me, it was absurd how people treated me as soon as I started talking about pain. Every single doctor I talked to went from helpful, to curt, (sometimes even rude) as soon as I told them that I was in agony most of the time. I was shocked. I thought a doctor would look at me, and say, “I don’t think it’s normal to live like that. I think something is medically wrong with you, and I’m going to do my part to find out what it is. And, if I can’t, I am going to refer you to someone who can.” I didn’t think they would say, “We don’t deal with pain here. You have to see a specialist for that. We just look to see if joints are swollen. And if they aren’t, I don’t know what to tell you. I can’t refer you to anyone. (The next is the author’s addition) You are probably faking pain to get drugs.”
Why has it become unreasonable to listen to a patient who knows their body, is listening it, and is talking to a medical professional about it? For the first year that I was seeking treatment, I insisted with every doctor I talked to, that I did not want pain medication. I wanted to be taken seriously. I knew that something was wrong with me, and the primary evidence was how many waking (and sleeping) hours I spent with the sensation of knives and needles being driven into my bones, and then lit on fire. Even though I insisted I was not after pain pills; every single doctor I saw treated me like I was some junky, looking to take advantage of them, and my $0 co-pay, to get free drugs. One even offered to write a prescription right there, with her eyebrows arched, as if I was going to fall to pieces and agree to some pain pills. With a great amount of calmness (and to be honest, a bit of pity for her), I said no, and asked for her to take my complaints seriously.
“I know my blood work has come back saying I don’t have any of the diseases that would explain my symptoms. I know that you are the 3rd doctor I have seen, and there is no diagnosis. But I know that something is wrong with me, and I just want my life back. I want to get better.”
She suggested I start taking an anti-depressant. Have we really gotten that far along the socialized medicine route? Do we now treat every person as if they are faking an illness in order to take advantage of the medical community?
I feel like this is the part of the movie where the viewer sees intense close-ups of the actress’s face, while screeching minor chords are being pounded out in the musical score, and I scream, “What’s going on!? Has everybody gone crazy!?”
I work full time. I am a mother. I run a home. I volunteer at a local food pantry once a month. I even go to church. Here’s a tidbit that is going to shock you: after I received a diagnosis (I’d prefer not to mention what it is, but it’s a serious auto-immune disease) I had a pain specialist prescribe some heavy opiate therapy. I felt better. [gasp] I was able to go back to work. I was able to get up and be the mom that I am supposed to be. And, I’m responsible with the medication that I’m prescribed. I don’t get high. I don’t sell my medication on the street.
So why all the social angst? Why has it become fashionable to turn up our noses when a patient reveals that they are in physical agony? Why are we treating people like they are making up sickness, and leaving them untreated? How did we get this far?
I’m not an anomaly. Welcome to the new normal.