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!!!       

Advocacy Of A Different Sort: Justice For My Dad

Where have I been, for like, the last year, you’re wondering?

Other than sharing that my dad died, I didn’t really get into the specifics of what happened.  I wasn’t ready, and was trying to see how some things going on in the background played out.

In an effort to protect those involved, I tried to stay as silent as possible while trying to do as much as possible.  But it has become clear that such tactics will get me nowhere.  And now I am ready to share about this publicly in the hope that sharing this will move things forward in a positive and productive way.

As many of you do know, there was a severe storm in Michigan on August 11, 2014, that caused widespread flooding.  My dad was trying to make his way home from work.  Eventually, my mom could not reach my dad and had a vague description from him about where he was. 

My dad was never 15 minutes late, so my mom became extremely worried, given that and the dangerous nature of the storm, after more time went by and my dad was still not home.  She attempted to file a missing person’s report at all of the local police departments in the area, but they all refused because my dad had not been missing for 24- to 48-hours.

As it turns out, this waiting period is a fictitious rule that has been popularized on TV shows.  It’s encouraging to know that, that’s how some police departments come up with their policies – TV. 

Ultimately, while my dad was noted as missing, he wasn’t put in the state database, which would have prompted law enforcement to look for him.  With him simply being in the county database, nothing was done.

My dad was found almost 24 hours later, dead in his car.  He wasn’t found by the police, but by a man who had seen him (alive) the night before.

For my family and I, the question we will never stop asking is whether things might have turned out differently if the police had been out looking for him.  Of course, those in law enforcement make themselves feel better by saying it wouldn’t have mattered, but they don’t have to live with that question for the rest of their lives like we do.     

There are many things I have done already.  I share this so that if people have other ideas, they can let me know, but I won’t end up with tons of comments telling me to do what I’ve already done:

-         Wrote a letter to my parents’ local police department to express concern about the way the situation was handled, including botched death notification.

-         Had a terrible phone conversation with a lieutenant from the above department, who told me that my dad didn’t warrant departmental resources, which prompted me to write a letter to state officials. 

-         Obtained police report via Freedom of Information Act request, which caused me to question why my dad had not been entered into the statewide database.

-         Wrote letter to state officials.

-         Worked with several offices to see what could be done about this situation.

-         Contacted detective that was assigned to my dad’s case.

-         Obtained death certificate.  Cause of death is listed as “atherosclerotic heart disease.”  The problem with this is that according to this NPR article - http://www.npr.org/sections/health-shots/2015/05/20/408011861/map-reveals-the-distinctive-cause-of-death-in-each-state - atherosclerotic heart disease is the most common cause of death in the state of Michigan.  Do they just throw that on every person’s death certificates when they don’t know for sure?  I have maintained throughout this past 15 months that the cause of death was not natural because if it hadn’t been for the storm and the lack of law enforcement action, my dad would still be alive.  

-         Tried to get in contact with the person who my dad had spoken to on the street where he was found.  Unable to do so.

-         Spoke to someone high up in Michigan law enforcement administration that was referred to me by one of the representatives I was working with.  I was told that legislatively, nothing can be done.  I’ve been told that a law that goes back to 1968 says that people may be entered into the database immediately, but this is not a requirement.  There are two problems with this.  First, if missing persons are entered into the database at the discretion of local departments, this will continue to happen.  Second, there are protections for children and the elderly, but apparently, everyone aged 18-75 doesn’t matter.  I am told that if everyone “missing” is entered into the database, it will be a strain on resources, but this has not proven to be the case in states that have adopted similar legislation.    

-         Decided to no longer remain silent.  Started change.org petition. 

Something I have struggled with over the last year is grappling with this tragedy while also living with my chronic illnesses.  When I first got sick, I selfishly thought that getting sick was the worst thing that could ever happen to me.  Then, when my dad died, the worst thing that ever happened to me, happened to someone else.  That has rocked me. 

I have always been open and honest with my readers, and it has pained me not to share this experience with you.  I have been wanting to.  But I needed to do it at the right time.  Is there ever a right time?  Probably not.  But right now is the right time.

Here’s what I need from you:

I ask that you please sign and share the following change.org petition - https://www.change.org/p/michigan-state-house-michigan-state-senate-pass-neal-s-law

You don’t have to live in Michigan to sign!

I am so grateful to those that have already signed, shared, and posted comments of support. 

I’m working on a book about this experience, which I will hopefully have some time to work on more in the next few months.  I ask that you assist me with this when the time is right.

I have been told that nothing legislative can happen, but I don’t believe that, hence the petition.  What I have told those in the system is that I will no longer remain silent.  I will share this story far and wide until something gets done so that no other family in Michigan experiences what my family and I did.

Although my dad was missing for “just” 24 hours, I can’t describe to you the feeling when you don’t know where your loved one is.  It’s indescribable.  It was the longest 24 hours of my entire life.  So I can only imagine what those people go through whose loved ones are missing for longer or are never found at all.  No family should have to live with the question of whether their loved one would still be alive if law enforcement had acted expediently.

This is the mantra that I will live by in order to persevere although many in power stand in my way:

“Whoever destroys a soul, it is considered as if he destroyed an entire world.  And whoever saves a life, it is considered as if he saved an entire world.”

– Mishnah Sanhedrin 4:9; Yerushalmi Talmud, Tractate Sanhedrin 37a

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.

Insurance Company Decides They Will No Longer Cover Compounded Medications

Today I called my compounding pharmacy to refill my prescription for Quinacrine. 

I received a call back from my pharmacy saying that the medication is no longer covered by my insurance, which means paying $95 out-of-pocket per month instead of $25 per month.

Of course, this is not the news I wanted to hear, nor was I expecting to hear.

So I called my insurance company, and after talking to three different people, I was told that they have decided to no longer cover any compounded medications.

I explained that I have lupus and RA, and that this medication is working for me, so would they provide an exception?  Of course, the answer was no.

It’s really crazy though that they covered it last month and are no longer covering it this month. 

Insurance companies make these willy nilly decisions and they don’t bother to think about who they are impacting and what the consequences of such decisions are.

At this point, because the medication is working for me, it really doesn’t make sense to go off of it and try something else, even if it would mean a more manageable cost per month. 

$95 a month is going to be hard to swing, along with the other medications I take costing $70 per month, and now that I am seeing an out-of-network therapist that is charging me $125 a week. 

Holy credit card debt here I come.  I guess that’s the price you pay for some modicum of health. 

I guess I’ve always known that being on a medication that is no longer commercially available in the United States, I run the risk of just such a thing happening.  But I don’t think I ever imagined that the insurance company would make a blanket rule refusing to cover any compounded medications whatsoever. 

And it’s always beyond frustrating to talk to insurance companies because they just don’t get it.  They aren’t doctors and they aren’t patients.  They’re just cogs in the wheel of the medical industrial complex machine.

They are talking heads.  They are mouth-pieces.  They are simply uncaring and unsympathetic.  And they put those of us who are chronically ill and in need of meds to function in a really crappy position. 

I’m not there yet, but some people have to decide between eating or taking their meds.  And that just shouldn’t be.

I hate it when I am forced to make decisions about my healthcare based on the dictates of my insurance company and nothing else. 

I know that they are customer service people, but I really resent being asked the question at the end of the phone conversation today: “Is there anything else I can help you with today?”

First of all, you didn’t help me.  You just kind of ruined my life. 

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.