When You Are “Protected” From Your Protected Health Information (PHI)

I recently had to obtain my medical records from the rheumatologist at Mount Sinai Hospital that I saw while I lived in New York, and the records for my two most recent appointments with my now technically “old” rheumatologist at the University of Michigan Hospital.

Recall that I had obtained all of my other previous medical records from the University of Michigan before I moved to New York, and that was total chaos to the tune of $361.26 (Read: What Happens When Your Medical Records Aren’t Yours?).

Well folks, they’ve done it again.  And by “they,” I mean the medical industrial complex, the geniuses who got the idea that patients should be charged to obtain their own protected health information.  That information is so protected that even, I, the patient, cannot have easy access to it.  That is, of course, unless I pay for it.  So I can access it, but it will cost me more time and money, over and above the cost of living with illness itself.      

This time, I legit don’t care about the money.  Between the two requests, I’m out just under $25.  It’s the principle.  I can understand that if you’ve already obtained the full version of your medical records, if you needed additional copies that there might be a charge.  But to obtain any part of your record for the first time?  It simply shouldn’t be allowed.  And if it’s going to be allowed, then these facilities need to follow their own rules and policies, which as far as I can tell, they aren’t.   

For the Michigan records, the form clearly states that I wanted to receive a call regarding the charges before the request was processed.  THAT NEVER HAPPENED.  The form also states that there will be no charge for record requests that are one (1) to 75 pages.  However, I was charged a “reproduction fee” and shipping, which cost more than the “reproduction fee”.  I think “reproduction fee” is a fancy way of saying, we’re going to get you, but by giving it a fancy name, we’re going to make it so that you can’t fight us on it. 

For the Mount Sinai records, I was charged over $10 for priority mail.  The records could have been mailed cheaper, I have no doubt about that.  But I had no choice in the matter.  They sent them how they sent them, and made sure the bill was on the top of the pile. 

I assume that the records – from a hospital in Michigan and a hospital in New York – both came from the same address in Atlanta because both hospitals use the same electronic medical record (EMR) program.  This protected health information is so protected that information from Michigan, New York, and who knows where else, ends up in Atlanta for printing, and costs me money to ship back to me.  Sounds really safe, doesn’t it?  My information is really protected when it lives in one place and is sent to another place just to copy and mail back. 

I don’t understand why these records are so valuable to the people that are charging me for them.  But they are valuable to me.  They are PRICELESS.  I need this information.  And to date, I have found no EMR system that is able to provide the level of information that the actual paper record provides.

Why should I have to pay for the record for services when I’ve already paid high costs physically and emotionally for the services that have been provided?  It’s adding insult to injury.  It’s telling me that someone is more deserving of my information than I am.    

And who’s benefiting from this?  Not me.  Not the patient.  Not the person who has to shell out money for the sake of continuity of care.  So I ask why?  Why are companies doing this?  There is no explanation other than making a profit.  Well guess what?  It’s criminal.  It’s profiting off of the pain and suffering of sick people.  And I’m literally and figuratively sick and tired of it.  I shouldn’t have to fight, or pay, to get access to my own information.  No one should.  There has to be a better way. 

I guess in reality, PHI really means protecting patients from themselves.  But I don’t want this information kept from me.  In order to be a fully engaged patient, I need to be able to access my medical record.  I fear that what actually occurs is not protection but highly unsafe and poses risks to everyone, and people will suffer even more by not having access to information, that as patients, we so desperately need.  Nothing about us, without us, right?

As far as I can tell, my information can be farmed out to companies across the country and they have an easier time getting their hands on my information than I do.  I should not be obtaining this information on an as needed, or need to know basis.  Having FREE and EASY access to my protected health information should be a right, not a privilege. 

Have you had this happen to you?  Please share your stories in the comments, and share this post with others. 

THIS NEEDS TO STOP, NOW!!!       

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.