Someone Get Me a Damn Map to Mordor

Considering the last post, and now with this one, I might have to rename this blog image ranted.  Yep. This is another rant.

This time it’s about some health care issues I’ve had to tangle with in the last week.  What I am about to lay out isn’t even centered around my physical or mental health issues. It’s entirely because the health care industry, in the United States, is structured against people.  I don’t want to call us patients, because if things worked differently, so many of us wouldn’t be considered active patients.

I have to preface, that I was diagnosed with lupus about 10 years ago, and with fibromyalgia about 7 years ago. I have spent years hitting the high deductible on my insurance, just to keep a status quo. I have been on gabapentin (neurotin), which is a nerve blocker. I was up to 1,500mg a day at the height of my prescription. I have also been on cyclobenzaprine (flexeril), which is a muscle relaxer. Since I was diagnosed, I have been searching and looking for anything that can help me address the pain, so I can get off these pills.  

This year, I made a decision that instead of hitting my deductible, on maintaining this shitty status quo, I would invest in different therapies and methods to attempt to address my chronic pain and fatigue in more natural ways.  I started by going to an upper cervical chiropractor. A friend contacted me on facebook, telling me that one had drastically helped her with pain issues.  I researched the science behind it, and decided to give it a try.  Most ucc’s don’t take insurance because they are such a niche practice and fighting with insurance companies is too costly for them.  I tried to submit a bill, on their recommendation that my insurance might still accept it. I found out that I have an out-of-network deductible, which is independent of my in-network deductible, and it is slightly more. This means I would need to submit expense receipts for that amount, and have them denied, before they might kick something in. I’ve spent $1,300 on this so far.

I started stepping down to gabapentin.  I had previously pulled back from the 1,500mg to 900mg, because it was making me dizzy all the time.  I am now down to 300mg.  I have a massive stash waiting to go to a drug drop off, because they gave me so many. Yes I have more pain, more of the day, but I was in pain no matter what.  I want off these meds.

I also wanted to find a nutritionist. I went to my insurance website, to look up my plan and see if a nutritionist was covered under my plan. It seemed they were, but only for certain things.  I called my insurance and asked them if I could get a pre-estimate. They said no. They said I would need to go to a nutritionist, incur a bill, and then they would see based on the code the nutritionist put in.  I asked which code was covered. Shockingly, they wouldn’t tell me. (yes, that’s sarcasm)

I finally decided to throw the dice and go.  In our first session, she told me I was going to be covered. Apparently, she came prepared and knew the answer.  I liked her already! I would be covered for one, 1 hour visit, once a month for a year. Opioids, they hand out like candy. Nutritionists are what they are stingy on.  Don’t want us too healthy!  This would still be an out of pocket cost, but at the price negotiated by my insurance.

My new nutritionist had gone over my forwarded medical records and found my doctors neglected to order 9 different blood tests that she thought might either rule out or explain some of my issues. She said she would request that my primary doctor submit the order for those tests, and that I should get a pre-estimate, so I know how much they will cost.  We discussed some other things, and planned to reconvene in a month, hopefully after I’ve taken these tests.  

Tuesday morning, I saw in my online medical chart, that the tests had been ordered. I copied out all the names of the tests, and signed into my health insurance website.  I started a chat and asked if they could help me identify an estimate of the cost.  The customer service rep informed me that they could look up a range of the costs, but that it would depend on where I went. I responded that I would appreciate any info they could give.  In the end, they were able to give me a range for 5 of the 9.  They also gave me a link to Fair Health Consumer, a website where I could look up this stuff, and hopefully get some information. 

They also recommended that I contact the lab, so I did that next.  I called the specific lab, within the network of labs that I could go to. The person I spoke with said they couldn’t help me with costs, but gave me 3 different numbers that were the lab network’s billing or billing type departments. I called the first one, and they gave me another number, but also offered to transfer me to them. They informed me that I needed to give them the 5 digit billing codes.

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Do I look like someone who works for your labs? What 5 digit codes? They said I needed to contact my doctor or… my health insurance.  Awesome.  I then message my doctor. “Thanks for ordering the tests. Can you please give me the 5 digit codes? I need them so I can get a pre-estimate for the cost, so that I can budget the expense.”  I always get a response from the Doctor, himself.  Understandably, a nurse or support staff responded.  She told me that I should ask my nutritionist.

I’m getting a little done now. I’ve spent way too long on something that should have been provided without me even asking. I told my boss about all of this, and he likened it to grocery shopping. It’s not like you go through the store, fill up your cart, and then find out the cost when you ring out. You know going in, what the cost will be. It’s actually law, that they have to have the cost listed. This prevents them from charging one person a different price, than another person. Fair pricing. What a novel idea.

Nevertheless, I message my nutritionist, even though I’m guessing she won’t know them.  As I predict, she responds that she doesn’t have any access, and the doctor’s office certainly should.  The nutritionist couldn’t even order the tests. My doctor had to. So I respond back to the nurse or support staff and convey that I confirmed my nutritionist can not help. I mention that since the doctor can order the tests, I would hope they would know what codes they are, and to please help me identify them.

I have not heard back.

I then check out that aforementioned website.  It looks like this site has codes!!!! I start looking up each test.  Problem is some of the don’t match the exact name. They are these super sciency names. If you can’t tell by now, my heart is liberal arts. I love and respect science, but it’s like speaking another language.  I had no way to know which code was the right one, for multiple of the tests. I guess I’m waiting.

This morning, I decided to call my doctor’s office and see if I might get somewhere talking to someone, instead of waiting to see if I would get a response to my 2nd request for the codes. They informed me that this isn’t something they are familiar with either.  They were researching, but said there was another number I could call.  It was one of the extra numbers I was given yesterday, but had been told it was just another lab network billing number.  The person I spoke with, at my doctor’s office, explained that this number was a mailbox. No one would answer the phone. You leave a message with what you want a cost estimate for, and they apparently call you back.

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Yeah, I’m back there again.  You’re telling me, I call this number, leave a long ass message with my name, my phone number, and a list of all 9 tests (at least 1 of which I don’t know how to pronounce) and someone will magically call me with all my info, in some indeterminate amount of time? Seriously?  You sure I don’t need to write a wish on a piece of paper, leave it under a rock, sacrifice a chicken under a full moon, and wait for my cat to tell me the codes, so I can get the keys to the kingdom?

I proceed to google the phone number, because this seemed ridiculous. I end up finding a website explaining that you can call that number or send an email.  I opt to send the email, so I don’t have to wonder if my voice mail was audible or garbled or whatever.  I could copy the exact names of the tests into the email.  I sent that off this morning.

And now I wait.

Let’s be clear. My new nutritionist requested those tests last Friday. It’s now the end of the day on Wednesday, and I still can’t get the codes or a price estimate for these 9 tests. My real frustration is that this system is fighting me. It’s not just against me, or for those profiting off it. They are fighting to keep in the dark, even on being able to budget these expenses.

I have been fighting for my quality of life, and for my health, for a long time.  I am overweight and I have a lot to work on, but that doesn’t mean I don’t deserve quality care. I also should be able to budget for this cost. I shouldn’t have to fight to be able to budget the massively expensive health care, that I’m paying for, out of pocket.

Some might wonder why I’m going through all of this, instead of just going. I need the tests, so “it is what it is”, right?  Yes and no.  Lupus and fibromyalgia comes with an onslaught of symptoms that can come and go. That means seeing different doctors for different reasons.  Years ago, I was having issues where my legs felt like something was biting them or shocking them, particularly late at night when I was trying to sleep. I called my Rheumatologist, and saw the Nurse practitioner.  She wanted me to see a Neurologist.  I already had one.

Once there, they wanted to order some blood tests and do a series of shock tests.  I got the blood tests done, and then went for the shock tests.  When I finished the tests, they told me at check out that the bill for the shock tests (not including the blood tests) would be $1,600. I was floored. No one thought to warn me??!?!?! I had to open a care credit card (I loathe them) as I forgot to bring my bags and bags of money with me. As long as I paid it off in the year, I would have 0% interest. If I went 1 day over the term, all the interest (something like 20%) would be tacked on.

I just want to prevent being caught in a situation like that again. Even if I can’t prevent the cost, I’d rather know up front, so I can prepare as much as possible. I don’t know why the health care industry wouldn’t want me to be able to do that. Oh wait. I do. They don’t work for me. They work for their CEOs and investors.

It’s often said that our health care industry is built to serve the providers. It benefits insurance providers, pharmaceutical companies, private hospitals, and certain areas of medical practice (some more than others).  What we don’t explicitly say, is that they are actively working against the people. They make the process a boondoggle, so there is no transparency, and so that we can’t see the whole picture.  They are working against our health and our quality of life. They are also working against our financial health.

Not for nothing, but this isn’t exactly a stress reliever.

I’ll post back when I get some answers.

Update:

I got a response from the email I found on that site, saying the tests would only cost $140, so I am good to go!  Now, was that so hard?

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