A “Bitter Pill”: Weighing In On Our Broken Healthcare System

An article in Time Magazine (titled “Bitter Pill”) recently chronicled the high costs of medication and other hospital services.

For those of us who are chronically ill, we know all too well that the financial costs of healthcare are extremely high, and can add a lot of stress to an already over-taxing situation.  So too are the emotional costs. 

It’s stressful when things don’t go the way you planned.  And I don’t just mean medications working the way they’re supposed to, test results, etc., I mean something as basic as procuring a prescription.  And it’s not just that these experiences are annoying.  They are unnecessary. 

Here’s an example:

When I started a new medication a few months ago, I was told that the prescription had been submitted to the hospital pharmacy where my rheumatologist’s office is.  I went to the pharmacy, and of course, they had no record of the prescription. 

I went up to my rheum’s office and talked to a receptionist.  I was informed that the prescription had been accidentally submitted to the student health center pharmacy, and that my doctor would have to redo the whole thing.

You would have thought I was a drug addict “jonesing for a fix”.  I’m not.  The problem was that there are very specific instructions for lab work that has to occur at certain times and at regular intervals.  To make it easier on myself, I had decided to do the blood work on Tuesdays, as I am already at the hospital to volunteer.  If I wouldn’t have been able to get the medication, I would have had to change my whole plan.

I called the student health center and they confirmed three things I pretty much already knew:

   1)      They could not fill this prescription because they do not stock the medication.

   2)     My insurance would only cover the prescription at a specialty pharmacy, which the student health center is not.

   3)     Because my doctor does not practice at the student health center, they could not have filled the prescription anyway, regardless of numbers 1 and 2 just mentioned.

So why did the system even allow it to get submitted there in the first place?

Ultimately, despite what I had been told, the student health center was able to call the hospital pharmacy and transfer the prescription over.  And I was able to get it that day.  But what started out as a 15-minute errand, turned into a nearly two-hour ordeal.

This directly speaks to the use of technology in the healthcare realm.  For the first time, patients are able to interact with their medical records and health information in truly amazing ways.  However, this technology has its pros and cons.  I talked about this at length in my post, “The Trials And Tribulations Of Electronic Medical Records And E-Prescribing* **”. 

As I suggested in that post, E-Prescribing doesn’t seem to work very well.  If you cannot get all of your prescriptions at one pharmacy, this is not something the system can deal with.  Similarly, the system defaults in ways that can cause the wrong pharmacy to be chosen or the wrong medication, wrong dose, wrong administration, etc. 

This technology makes doctors lazy.  They type stuff in without making sure that what gets submitted is correct.  And that’s what happened in this case. Because UMHS and UHS are very similar, my rheum thought he had selected one, when he had actually selected the other.

Then these things get sent out into the ether, and you only find out if there is a problem when you go to pick up the prescription and it hasn’t been filled for whatever reason.

And then it becomes the patient’s job to slog through the system to find out what went wrong where, and what can be done to fix the problem.

And since some insurance companies require different pharmacies for certain medications, drug interactions are a real concern, especially when the patient deals with four separate pharmacies for their various medications.

If that’s not stressful, I don’t know what is.  It means that the patient – who is often sick, tired, and unable to be a real advocate – really has to be on top of everything. 

On the one hand, you would think that it’s great to be an empowered patient with the technology that is available, but the way the system works has the opposite effect, and in fact, can be very disempowering. 

When obtaining a new prescription is like running a marathon, it’s very easy to want to beg out.  It’s overwhelming.  In some ways, the big things should be stressful, but these little things should not have to happen at all. 

I can’t imagine what it’s like for those who can’t do what I did or don’t have someone to do it for them, to hunker down and wait until the situation is resolved.  Not that I enjoy spending hours going on a wild goose chase, because I absolutely don’t, but I can.  I don’t take no for an answer.

It’s not easy to be chronically ill.  It’s downright stressful.  That’s why these “small” stresses brought upon by the healthcare system are so maddening.  Is it too much to ask for something to go smoothly, just once?  Yes, apparently it is.

Sometimes too much technology is a bad thing.  While, again, I do think that there are definite benefits to patients having so much of a direct connection to their health information, I also think that the system, as it currently stands, relies too much on technology that isn’t designed to deal with the nuances that come with having a chronic illness.   

Technology is supposed to make things easier, and maybe as far as healthcare is concerned, it does in the realm where healing time is quickened, procedures are made less invasive, things like that.  But in the realm that is the doctor, the patient, insurance companies, and the receptionists and pharmacists, it makes things more complicated.

Sometimes I want to scream, “Just give me a damned piece of paper.”  That’s an old-fashioned notion, I know.  But if I, the patient, could take the prescription to the correct pharmacy on the first try, it would certainly make things less stressful.  Or if I had that paper, and three prescriptions need to go to three different pharmacies, I could take care of that – and get it right – on my own. 

I think the most stressful part about this, however, is that in some ways, my life is in the hands of these people, and they don’t get it, they could care less.  The sense of urgency that I feel doesn’t register in their world.  So I take control.  I have to be my own – and best – advocate.  And yet, no matter how I hard I try, I sometimes find myself on the losing end anyway. 

Chronic illness is stressful.  And it would be nice if just once in awhile, one of the many people in the healthcare arena got it.  That they could feel your pain, or sense your frustration, and offer to lighten the load a bit.  But that rarely happens.  Instead, I’m stuck talking to technology that doesn’t respond.  I’m fighting a system that cannot be fought.  And while I appreciate the technological advances, I have seen firsthand, time and time again, the wisdom of a paper prescription that your doctor has to write out and sign.  That you agree to the terms and leave, prescription in hand, feeling empowered, feeling like the master of your dominion. 

Instead, I feel like a lame duck, like I’m stuck in a cycle of ridiculousness.  I leave feeling acutely that I’m chronically ill, knowing that my healthy counterparts deal with the system so much less often, and probably much more smoothly on the occasions that they do.

So my pills are a constant reminder of the struggle I face.  Even though they may be hard to get my hands on, I swallow them dutifully, albeit, even though they leave a bitter taste in my mouth, the remnant of fighting for my health and my life, in a system that seems to serve everyone other than the patient.

  

Humira Pen Is Out; Humira Pre-Filled Syringe Is In

 That’s right folks.

After another botched Humira injection, I have decided to throw in the towel on using the pen. 

But since I feel like Humira is working well to control my RA, I e-mailed my rheumatologist to see if he could prescribe the pre-filled syringe instead.

Clearly, the information on the Internet regarding the pen is mixed.  Some people can’t stand the pain the pen causes.  If you’re like me, it’s the click that the pen makes that is so anxiety provoking.

And I think this is part of the problem.  After reading a lot on the Internet before deciding whether to go on Humira, it really freaked me out.  People were saying how awful the pen was, and it made me really scared. 

I think sometimes the Internet can be our worst enemy.  While having so much information at our fingertips is great, giving us the ability to hear from others that we might not otherwise, sometimes it can be TOO MUCH INFORMATION.

And I don’t want this post to contribute to anyone’s fear who might be reading this.  This is my experience ONLY.  It doesn’t mean your experience will be the same.  I just got very used to injecting using a regular syringe when I was on Methotrexate, and that’s clearly what I’m most comfortable with.

Like I’ve said before, in the grand scheme of things, this should not have been such a trying experience.  There certainly are worse things that I’ve experienced since I got sick.  However, the Humira pen experience has caused more tears and more anxiety than anything else in recent memory.

I didn’t want to wuss out, but at some point, when I’m four for seven (barely), I decided that I couldn’t do it anymore.  It’s just not working for me.

And the thing that really told me this is sort of messed up.  Even though the injection was botched, I was so relieved.  Despite missing a dose, I felt loads lighter that it was over.  And that shouldn’t be.

I understand those who say we should be willing to endure a certain amount of pain in order to gain ground on our health.  And while I agree with that – I was willing to deal with the pain of the Humira injection – I would have jumped at the opportunity to get a lobotomy over continuing to traumatize myself with these injections.  And that also shouldn’t be. 

I’ve been less anxious for a colonoscopy than I have been for my Humira injections, although I wasn’t actually giving myself the colonoscopy, so…

There’s a difference between someone else injecting you, and you injecting yourself.  This is why injections are typically given in a doctor’s office.  If I wanted to do this, I would have gone to medical school.

While it’s common knowledge that I have never wanted to inject myself, I moved past that fear.  And while I wanted to not be one of those people who had to go off of the pen because I couldn’t tolerate it, the pen has been a huge stumbling block for me. 

And injection after injection, it hasn’t gotten any easier.  In fact, my anxiety has only increased.  When I start having breakthrough pain a few days before, I am reminded of the impending event.  And then the day of, I am a ball of nerves.

The other thing I didn’t like was that the pen never felt the same way twice.  The Humira instructions are very adamant about rotating sites, so that may have been part of it.  Also, doing it every other week, as opposed to once a week with Methotrexate, I think it is harder to get used to. 

But this journey has been further complicated.  While my rheumatologist was very willing to make the switch, it was by no means instantaneous.  I e-mailed him Wednesday evening and he e-mailed me back quickly.  Then I called the pharmacy at the hospital on Thursday to make sure the prescription was ready before I made the trip, and the only thing they had received was a prescription for the pen.  I called my doctor’s office, and spent 15 minutes on the phone talking to a nurse. 

The staff at my rheumatologist’s office is very hit or miss.  Some people are great.  You talk to them and whatever you need gets taken care of right away.  Some people aren’t.  You have to call multiple times, tell them the same story over and over again, and still don’t always get results. 

This was my experience this time. 

I was passing by the hospital on Friday, so I went in at just before 2 p.m. to see if the prescription was ready.  They told me that nothing else had been submitted, since the incorrect prescription the day before.  So I went up to my doctor’s office to try and get things straightened out. 

As I was getting off the elevator to leave the hospital, the nurse who I had spoken to on Wednesday, who was supposed to call me back that day and didn’t, called me.  She asked if I had gotten my prescription.  I told her that no, I was at the hospital, but hadn’t been able to get it.

She told me to stay put and that she would call me back.  She never did.  I finally went back to the pharmacy.  One person tried to tell me that the pen is the only method of delivery for Humira.  I tried to calmly explain that the pen and syringe are different.  Then they told me the insurance rejected the prescription because it was too soon to fill.  I explained the situation, told them I wasn’t able to get my last dose, and that if they approved the syringes, this problem would never happen again.

I feel bad that the pharmacy had to fight with my insurance company, but honestly, better them than me.  I also feel that my rheumatologist’s office could have done a much better job of helping to me to secure the medication.  It doesn’t bode well for them if I’m off my meds.    

But at this point, that’s neither here nor there.    

I spent over four hours at the hospital.  The pharmacy closed at 6.  At 6, I was still standing there, waiting, and not knowing what was going to happen.  I didn’t know what I was going to do if they would have sent me home empty handed.  I might have refused to leave.  I’m pretty sure I would have blown a gasket. 

By this point, my nerves were so frayed that I couldn’t even think about doing the injection.

So I waited until Saturday, and I couldn’t do it.  I was just totally paralyzed by fear.  And I was totally freaking out.  Normally, my Humira shot is on Wednesday, so I was already four days behind, and starting not to feel good.

My parents and sister drove over an hour so that my mom could come and give me my injection.  I have to apologize to them and my boyfriend for causing them so much stress.  My anxiety just totally ran away from me, and I could not get it in check.  But I am a lucky girl to have such wonderful people in my life.

I want to emphasize, again, that this is only my experience and not indicative of others’.  However, if you are having problems using the pen, I would definitely talk to your doctor to see about switching to the pre-filled syringes.  I only wish that I would have been a better advocate for myself, and had tried to get the change completed sooner than I did.  I know myself well enough to know that things weren’t getting easier for me.

As I suggested in the post I submitted for the latest edition of Patients for a Moment, Humira has been my Achilles’ heel.  And I’m not ashamed to admit that.  In fact, I think we all have something that we just can’t handle when it comes to the chronic illness experience. 

Like my mom said, I’m not Hercules.  And she’s right.  We can’t all do everything, and that’s okay.  It’s frustrating to me that the Humira pen was so traumatic that I digressed in terms of being okay with needles, and being okay with injecting myself.  I was one hot mess on Saturday.  Rather than beat myself up, though, I am going to try and move forward, and hope that these injections get easier as time goes by.  I hope that because the syringe is more failsafe than the pen, I will get my confidence back, and this will no longer be the hellish ordeal that it has been for the last few months.