Are We All Just Paying To Die?

I wrote a post in September, Doctors Are Part Of the Problem, But They Can Also Be Part Of The Solution, about a terrible appointment I had with my (previous) primary care physician (PCP), in which I was degraded and basically accused of faking my illnesses. 

But then the situation got a little bit worse. 

BECAUSE I GOT BILLED FOR IT. 

Not only that, but it was a bill for $125 for an “extensive physical examination.”   

When I get bills, I pay them.  Even when the amount is painful.  Even when the bill gives me sticker shock and I see red.

AS LONG AS SERVICES ARE RENDERED.

But if you try and charge me for services that were not rendered – and that we both know clearly were not rendered – I will fight back. 

(Cue “Ferris Bueller’s Day Off” – This is where Leslie goes berserk)

All I received was a lecture, and a misguided one, at that.  And then, to add insult to injury, I was billed for it.

I still can’t get over it.  Clearly.  The gull of the doctor.  Apparently he didn’t realize who he was dealing with.

I was so angry that I handwrote a letter.  I just couldn’t stop myself. 

I’ve included the letter here, both pictures of the handwritten version (which I promptly sent) and the text so you can read it (names have been redacted).

***** 

To Whom It May Concern:

I will NOT pay this bill.  On this date, at this appointment, there was NO examination.  Nothing was done other than Dr. _____ yelling at me for no reason.  I was accused of faking my illnesses.  I’m sorry that your office staff sucks, but as a patient, that is NOT my problem, and should not be taken out on me.  You can send this bill to collections if you are that petty, but I will fight it.  If Dr. ______ cares at all about anything other than the bottom line, this bill will be wiped.  It’s the right thing to do and he knows it.  My _____has an established relationship with Dr. _____ and I don’t want this to impact their relationship.  However, if this bill does not disappear, there will be a big problem.  I’ve never been treated the way I was that day by any doctor ever.  And I’ve seen a lot of doctors.  I will not pay money for services that were not performed.  That borders on malpractice.  I sincerely hope other patients will not be treated the way I was.

Leslie Rott

*****

Should I receive a call from a lawyer or a collection agency, I will be happy to them exactly why this bill will not be getting paid, and why, quite frankly, this doctor should not be practicing medicine. 

Additionally, I recently learned that, bloodwork I had put off and then had done, even though I have since made the decision never to go back to this doctor, not only did not confirm his belief that I was faking my illnesses, but did confirm my belief that he believed I was faking my illnesses. 

He ran a variety of tests, including anti-nuclear antibody (ANA), which is a diagnostic test, a confirmatory test, for autoimmune diseases, like lupus and RA.  If he was really curious, this is a test that he would have run when I first started seeing him.  But no.  There’s something cold and calculated about him running that test when he did that makes the situation all the worse.

I always knew that doctors like this existed, but I had never experienced one firsthand. 

Aside from the moral problems I have with this entire situation, I also have a practical problem.  Unfortunately, sick people need doctors.  I am chronically ill, and as a result of this situation, I no longer have a PCP.  And based on my past negative experiences – although this one being the most negative – I’m not too excited about finding a new one. 

But I need one.  And it feels like a lot of work. 

So I am left to wonder.  Are we all just paying to die?

Are we all paying to stay well and avoid becoming ill at all costs?  And then when we get sick, are we paying not to die?  Which, in the end, leads to the same, unfortunate, inevitable conclusion?

My Bubbie passed away at 90, and was pretty healthy until almost the very end.  But I watched the end of her life become the most physically and emotionally painful, and also the most costly.  I am 31.  I am not healthy.  So by that calculation, I will pay and continue to pay not to die.  The most costly times, health wise, are still in front of me, and in the end, I will die anyway.   

I can only fear that in our fast approaching new political climate, this situation is only going to get worse.  We will get poorer quality services at a greater cost to us.  And in the end, we will be sicker for longer, and we will die, sicker.    

We’ve already seen what happens when people in power use it against those who do not have that same power.  I’m not trying to get political here.  But I am using my voice.  And unfortunately, even though one of my New Year’s Resolutions for 2017 is to get un-angry and to focus on the positive, one power I do have is not to stay silent and to expose medical “ills” where I see and experience them.  Therefore, I am sharing this experience, despite the fact that very little good can be found in it. 

Because doctors like this are not doctors at all.  They use their power for evil instead of good.  They give the medical profession a bad name.  They make patients feel badly about themselves, they accuse patients of faking their illnesses, when they, themselves, in fact, are playing the system.  They are charging patients for services they did not render in the hopes that no one will have the time, will be too sick, or will not pay enough attention to take a stand and fight back.   They also make those who are healthy feel that doctors are too cumbersome, so they avoid them at all costs, until they become sick and have no choice.  

That Time I Got Manhandled By A Phlebotomist

The scene of the crime...

Having dealt with chronic illness for over eight years, you would think by now that I wouldn’t get phased by blood draws. 

But I recently had a particularly bad one that was enough to put me off of it for a while. 

Apparently, when I saw my rheumatologist at the University of Michigan Hospital at the beginning of August, the lab there did not do all the tests that my doctor ordered.  I’m not sure how that is possible since it was all sent electronically, but they didn’t.  I was also told that because of one of the medications I’m on, I have to get my blood drawn every other month, even though I didn’t have to do this with my last doctor, who was the one that put me on the medication. 

So in order to get the rest of the labs done and set up the standing order, I went to the lab at a local hospital near me, as it’s not realistic for me to go all the way to Ann Arbor just for a blood draw. 

I expected that this would be a routine blood draw, but not so.  (And by routine, I mean I know that I am a hard stick) 

The first phlebotomist spent about 10 minutes feeling around for veins in both arms.  That was a red flag to me.  I would much rather have had this person feel around and then give up, rather than try twice and fail miserably. 

The first time she tried, she got the needle in and proceeded to move it around.  Like really move it around, to the point where I was ready to scream, to the point where I thought if it was possible for the needle to come out the other side of my arm, it would.  Finally, she pulled the needle out.  But I’m not really sure why she couldn’t get blood from that area because of the amount of blood that proceeded to flow from my arm when she took the needle out.  

Then she asked if she could draw from my hand.  If you stick a needle in me and draw blood from my hand, fine, but if you stick a needle in my hand and get nothing, we definitely are not friends. 

After that, she said she would get someone else.  Yeah, good idea lady. 

The second person came in.  She asked where they normally draw blood from and I showed her the same spot that I showed the first woman, who opted to do her own thing.  The second woman went in the spot I showed her, and sure enough, blood came out, albeit slowly.  She asked me if I drank water.  I told her that if it was about how much water I drank that day, the blood should be flowing out of me. 

And we won’t even talk about the fact that they started decanting the blood into vials and the second woman proceeded to get my blood everywhere.  Well, we will talk about it because it sucks.  It took hard work to get that blood and then you go ahead and spill it all over the place?      

The second person asked if I was okay and needed juice.  I replied that I was fine and didn’t need juice. 

But in reality, I wasn’t fine.  I left the lab pissed off and frustrated.  I didn’t need juice.  I needed a break.  I needed to get out of there. 

I need to escape from the monotony of it all.  Actually, it’s not monotonous.  It’s always an adventure, and that’s what really gets old about it.  In reality, the routine is for nothing to actually be routine or ever go as it should.

And this situation was just too much.     

It feels like a profound violation.  Normal, healthy people don’t allow things like this to happen to them.  But as a sick person, I’m supposed to sit there and take it.  Without question.  Without argument.  And definitely without anger or frustration. 

Is there a glamorous side to chronic illness?  Some people try to find it.  But right now, I’m not seeing it.  I didn’t sit there with a smile on my face despite the pain.  I bit my lip and gritted my teeth.  But more than anything, I wanted to punch the phlebotomist in the face.  I wanted to pull the needle out myself and tell her I was done.  I wanted to walk away.  I wanted to call my rheumatologist’s office and tell them why I was choosing to be “non-compliant”, and why they can’t make me get my blood drawn, even if they threaten to take my medication away. 

The reality is, all of these small violations take their toll.  I am used to being stuck multiple times per blood draw, I am used to bruising after a blood draw, I am used to lab techs saying stupid things to me, like telling me that I have to put my arm out straighter even though I have arthritis and cannot physically accommodate that request. 

But when all of those things happen at once, when I am attempting to do my duty as the dutiful patient, and it all goes horribly wrong, it’s just too much. 

So yesterday’s anger and frustration has transferred to today.  And so I’m writing the shit out of this experience because I don’t want to stay angry.  I know that there are bumps in the road.  I know that some days are easier than others.  And yesterday was a bad day.  My body reminds me almost daily that I’m sick.  So these not-so-subtle reminders that I truly am sick are sometimes just too much.    

Maybe the bruises on the outside show a fraction of the physical pain I feel on a daily basis and the emotional pain that sometimes occurs as a result. 

I wish I could say that I got in a fight.  I wish I could say, “You should see the other guy”.  But the other guy doesn’t care.  The other guy has education and training to draw blood.  But even I can stick a needle in myself and get nothing out.  Maybe I should learn how to draw blood.  Is it possible to draw your own blood?  If so, I’d probably have about the same success rate at the phlebotomist who manhandled me.  But at least I’d be doing it to myself and not allowing someone else to do it to me.   

When The Advocate Struggles To Advocate For Herself

I had an appointment with an immunologist a few weeks ago.  I’ve never seen an immunologist before, but I am having some problems that my rheumatologist is kind of mystified by.  So she told me that I should see an immunologist, and told me the specific doctor I should see.    

I’ve been waiting for the appointment for a couple of months.  I left work two hours early, and due to transportation issues, took a cab to get to the appointment. 

When I got to the doctor’s office, they told me they didn’t have the referral and they wouldn’t let me see the doctor without it.  I called the student health center at school.  The director, who I dealt with in regard to the referrals, was in a meeting, but the receptionist told me she would make every effort to get the message to her.

My appointment was scheduled for 4 p.m.  At 4:30 p.m., the health center director called me, apologized, and said she would fax over the referral.  To be clear, I was told on October 29^th that the referral had been processed, so I’m not sure why the doctor’s office didn’t have it.

Part of the problem is the way my insurance works.  I can basically see whoever I want as long as I have a referral for it through school.  Given my complicated health situation, this basically means that I can e-mail the health center director and she will write referrals for whatever I need, especially considering that the health center doesn’t offer many of the services that I actually need. 

What this means is that my rheumatologist can tell me to see an immunologist, in this case, but because she is not associated with my school, a referral directly from her holds no weight with my insurance company. 

I was sitting with all the paper work they asked me to fill out, and someone came over to me.  She could probably tell that I was struggling to hold back tears due to frustration.  She asked the person who had been helping me if they had tried to contact my insurance company.  The woman said no, so the other woman told her to try that.  I’m not sure what that actually did.

The referral got faxed from my school and then the doctor’s office told me they have to verify it.  At 4:45 p.m., they told me that the referral has the wrong diagnostic code on it and that they can’t see me until that’s fixed, which means I won’t be seen and can’t be seen for another month.

They also told me that the doctor had to leave at exactly 5 p.m., so by the time they figured things out, there was really no time to be seen anyway. 

I sat in the office, feeling super frustrated.  I got really emotional about it.  And I wasn’t a very good advocate for myself, although I am not really sure what else I could have done.  I called the school, and I got the referral sent over.  I was led to believe that, that was all that needed to happen in order for me to be seen.  But I still didn’t get seen. 

I understand why patients get so upset and frustrated with the system.  And in my work as an advocate, I help them navigate situations just like this one.  But when it came to my own care, I couldn’t do it.  I couldn’t remain calm.  It’s not like I freaked out at anyone, but I was just a big ball of tears and emotion. 

When it’s your health, and someone is standing in your way and not willing to budge, it goes beyond frustration.  It’s not right.  A piece of paper shouldn’t define care, but it does. 

I considered asking if they would let me see the doctor if I paid out-of-pocket.  But I didn’t because I had been proactive about getting the referral.   

It would have been nice if the office would have called me a few days before the appointment, knowing that they didn’t have the referral, and knowing that they wouldn’t see me without it. 

In retrospect, I should have checked to make sure the doctor had the referral.  But I’ve never encountered a problem like this before.  I have to say, it was pretty demoralizing.  It made me feel that the doctor only cares about getting paid, and makes me wonder if I really want to get care from this person.

I contacted the health center director via email that night and she was extremely upset about the situation.  She confirmed all of my assumptions, basically for whatever reason that the doctor wasn’t really interested in doing her job.

If that wasn’t enough, I was told not to wear perfume and scented products to the appointment.  Which means that I didn’t wear deodorant all day because my deodorant is scented.  Sorry if that’s TMI, but seriously.  I couldn’t make this stuff up if I wanted to.  I don’t think my lack of deodorant had anything to do with me not being seen, though.  I hope not.   

Lessons learned:

-         Insurance rules everything.  The patient means nothing.  I really needed to see this doctor, but my health needs did not supersede bureaucratic bullshit. 

-         It’s all about money.  All anyone cares about is getting paid and making sure that there is someone out there who will pay. 

-         Always get copies of referrals so that they can’t pull this shit of saying they don’t have it.  To be fair, I have never had this problem before.

-         Apparently you have to give at least 24-hours notice if you can’t make an appointment, but a doctor’s office can cancel on  you when you should be seeing the doctor and face no negative consequences because of it.

-         I am seriously considering telling the doctor’s office that I will not pay my co-pay for the next appointment.  Technically, I’m out $70 for missed work time and the cab ride.  And because my next rheumatologist appointment is on the same day as my immunologist appointment, I’m missing an entire day of work because of that.

-         I plan to contact the patient representatives at the hospital where my doctors are, after the appointments happen, of course, because this situation is not okay.

What Happens When Your Medical Records Aren’t Yours?

You get a bill for $361.26.

I almost had a heart attack.  And then I burst into tears.  And then I got pretty freakin’ pissed off.

For that price, I could pay for 18 appointment co-pays with my current insurance.

I could do a lot with that kind of money, but I cannot afford to pay that for my medical records.

I wanted my medical records because I am moving.  And how was I supposed to know that my medical records over the past five years would be six inches thick, more than 1,000 pages?

When I got home one night a few weeks ago and saw a box from a health company in Atlanta, I figured surely that couldn’t be my medical records.  Then I picked up the box and it was heavy to the point where I knew it probably was.  And before I even saw the bill, I had a sinking feeling in my stomach. 

I feel like I am being punished because I have a complicated medical history.  It’s insane to me that these people look at this six-inch thick medical record of a 27-year-old, and rather than wonder what my life might be like as it is, they stick it to me even more.

And I was under the impression that if I was going to be charged more than $50, I would be contacted before they went ahead with processing my request.  That never happened.  Because if it had, I wouldn’t have been willing or able to pay that much. 

The other thing is that I poured through every page and found nearly 350 pages that were blank, only had the hospital logo on them, or only had the line about “electronic mail not being secure”.  There were 1,202 pages at 0.23 each.  I accounted for those, which included the 350 garbage ones I just mentioned.  But then there were 20 pages at $1.16 each and 30 pages at 0.58 each.  I couldn’t account for those.

But the real question is, besides how I was going to pay the bill is how can I be a responsible patient if my medical records are in Michigan and I’m in New York?

How is it possible that I have to pay for my own medical record?

This is the kind of thing that, as the chronic illness community, we cannot stand for. 

We have to speak out when injustices like this happen to us.

And I know I am not alone in these experiences.

When you can’t afford your medication, medical records, or something equally important regarding your health, it causes “good” patients to become “bad”.  It sabotages a patient’s quest for health, and can have deadly consequences.

I waited to write about this until the situation was resolved.  I didn’t want to hurt my chances of a decision in my favor.

Ultimately, I was bounced around between the medical records people in Michigan and the company that copied them in Atlanta.  Maybe if this were all done in Michigan, it wouldn’t cost so freakin’ much.

The person in Atlanta said that they didn’t know why I hadn’t been contacted ahead of time and said they had to call Michigan.  Almost a week went by without hearing anything, so I took matters further.  I knew that the worst that could happen was that I would be told I had to pay the full bill.   

So I contacted the Better Business Bureau.  The situation was stressful enough that I didn’t really trust myself to handle getting bounced back and forth, which seemed to be inevitable.

And this is the way a lot of health situations get handled.  You get bounced back and forth, the system hoping that you’ll just give up.  But when you feel you are being disenfranchised, you can’t just give up.  It allows the system to perpetuate the problem. 

This isn’t even really about this one incident anymore.  It’s about the fact that the financial burden of health-related expenses is making it impossible for some people to take care of themselves. 

I often think back to the fact that if I wouldn’t have had built-in health insurance from my graduate program, I probably wouldn’t have had health insurance otherwise, and I probably wouldn’t be alive right now.  That’s a sobering thing to think about. 

So fast forward five years later, I am alive, but being financially raped to gain access to my own medical records.  It’s just totally insane and surreal.   

It’s never fun to get a bill that you’re not expecting, especially when it’s for paper.  The worst part is that these people know how important my medical record is to me.  And I guess they figured they could totally take advantage because they know I need it.

Because let’s be honest.  Healthy people don’t need their medical records.  And if they do, they aren’t 1,200 pages long. 

I think that if you are going to be charged for your medical records, there should be a limit on how much they can charge you. 

Ultimately, it was determined that I should have been contacted ahead of time before the order was processed and because I wasn’t, the company changed the bill to $50.   

This felt like a huge victory for me.  But the thing is, I probably would not have gotten a resolution if I wouldn’t have contacted the Better Business Bureau.  So if you’re wondering if they deal with medical-financial disputes, they absolutely do.  I’m not for blowing smoke if there’s nothing to blow smoke about, but I do believe in looking out for yourself when companies/hospitals/insurance/pharmaceuticals are taking advantage.  And I very much felt that is what happened in this situation.   

So, in case you’re curious, this is what five years and 1,200 pages of medical records looks like.  Enough said.