Wednesday, March 5, 2014

I am Mama, hear me ROAR!

I seriously feel like David, with the giant Goliath at his feet, triumphant yet somehow disbelieving that I've actually won the fight.  Surely he's going to bounce back to his colossal feet and say say "PSYCH!".

I'm sure you're wondering (assuming anyone is actually reading this, I always feel silly making that assumption) what the heck I'm talking about.  So let me back up.

Last October (That's 5+ months ago), I got a letter from my prescription plan company.  I have health insurance through my job and there is a separate company that deals with medications and prescriptions. The letter was address to the Parent of Tyler L.  It stated that as of January 1, 2014 the medication he takes for acid reflux would no longer be covered under our plan.  Tyler has taken medication for acid reflux since he was about 6 weeks old because he spit up often and was a fussy colicy baby.  Reflux is very common, especially in male infants, and his pediatrician thought it was a likely culprit and it seemed to help a little.  At 9 months, the spitting up had basically stopped, so we were advised to stop the meds.  At 12 months, we discovered that Tyler had LOST weight.  He had lost several pounds.  We put him back on reflux meds and started giving him pediassure instead of whole milk.

Since that time, we've had a bunch of testing done (upper GI, x-rays, an endoscopy, a 2 day probe study, bloodwork, etc) but have never really gotten a lot of definitive answers.  I had one horrible GI specialist and one that was so-so, but they never seemed to make a lot of progress.  He's tried several medication, finally ending up on Prevacid, which seemed most effective for him.  It comes in a little tablet that melts in liquid.  We put one in his juice in the morning and it keeps his symptoms at bay for the most part.  He still has a very sensitive stomach, especially if he gets overheated from running around.  He's still a super picky, difficult eater.  But we've tried to wean off the medication several times, and every time is the same--complaints of a stomachache, particularly at dinner time and often accompanied by pressing on his stomach, loss of appetite, trouble sleeping, general fussiness, and if tried for more than a week or so, weight loss.  So this was the right medication for him.  Up until about 2 years ago, there was a generic that was available by prescription, but then it suddenly vanished from the market and we were left with the more expensive name brand, which eventually crept all the way up to my maximum co-pay of $95.

So, back to the letter.  I was not happy to hear this.  I knew I was in for a battle.  The next day, I called the company (I'm being nice and not bashing them by name) and told them I'd received the letter and that was just not going to work.  I'd checked, and without insurance, the medicine would cost me around $500 per month.  Now, I would do anything for my child, but that wasn't going to be possible without some serious miracles.  So the first guy I talked to said I needed a Prior Authorization, submitted from our PCP.  Okay, great, done.  Our awesome PA (Physician's Assistant) Amber and her amazing nurse Jenny drafted one up and sent it in.  Rejected--medication does not require a PA.   Oy.  Yeah, a PA isn't required in the plan in 2013, but under the new 2014 plan.  I was told the plan "wasn't loaded" and we should try again in a few weeks.  Okay fine.  We did this, with the same result.  Against my better judgement, I patiently waited until the new  year to try a third time.  Now I was told that we never needed a PA--we needed an appeal.  UGH.  So we filed an appeal and sent with it a letter of medical necessity, stating that this medication is the only one that really works for Tyler, here's the tests that have been run, here are the other meds he's taken, yada yada.  Denied.  They told us we needed to try him on Nexium.  I filled an RX and we tried it for about a week before it was clear it wasn't effective for him.

At that point, our PCP's office recommended that I call his most recent GI Specialist and have them give it a try. They thought the specialist might have more experience and their recommendations might be taken more seriously.  The specialist appealed the decision and they were denied (Appeal 2 out of 3 possible).  They said that he needed to try one more medication, Prilosec and if he failed it, they would approve the Prevacid.  We tried it for 2 weeks and it didn't work either.  The GI specialist sent the request through for a third time.  They were then told that we needed to try another medication.  When she told me that, I reminded her that's what they said last time. She contacted them again and they told her they needed a letter of medical necessity.  I told her our PCP had already sent one, but they insisted.  Unfortunately, Tyler hadn't been to the GI since 2012, so we were told we'd have to come in for an appointment before they could legally write the letter.  I grudgingly made the appointment, but I'd had enough.

I sat down one evening last week and wrote a letter.  I put in all the details of the medications we've tried, the information (and more often, MISinformation) I'd been given from their customer service reps, and all of my areas of frustration.  I told them how I couldn't get solid answers when I called, how I was even told that the department that I really needed to speak with "didn't have phones".  I was calm and mature, but still let them know that I felt it was unfair and cruel to put a five year old child through pain over something like this, to draw the situation out when a child's well-being is at stake.  I ended the letter by saying I hoped they would use my comments to improve their policies and appeals process and to train their staff to make the process smoother.  Then I said that if there was any assistance they could offer us, to please contact me.

Now, if you've ever tried to contact someone in upper management at a large corporation, you know it's nearly impossible.  They don't usually publish their email addresses or phone numbers, just basic information about the corporate headquarters.  And even I have been trained when answer phones at work, to withhold that kind of information, to solicitors from contacting management and that kind of thing.  But with some creative thinking and deductive reasoning, Adam and I were able to come up with the names of some high-ups and what we assumed were the email address that went with those names.  Friday night I sent my letter off as an email to about half a dozen individuals at the company.

Within a few hours, I got a response.  They would work on this over the weekend and I would be contacted on Monday.

Over the course of the day on Monday I got several emails and by Tuesday evening the medication was put on a one year approval and I was assured that should Tyler need the medication after the year passes, I should email this doctor personally and he would see that it was extended.  I got a phone call this afternoon saying my prescription is ready to be picked up.  I will happily hand over that $95 for once.

I am so relieved.  I've been fighting this battle for over 5 months, and even though I told myself I wouldn't give up, part of me didn't think I'd be able to get it done.  I've been in tears many times over this, so frustrated that some faceless corporation dared to play God with my son's health. I wanted nothing more than to make him feel better.  And now I can.

The only thing worse than a woman scorned?  A Mama Bear!  Don't mess with my babies!


Rachel said...

Yikes! What an ordeal! I'm so surprised they would put a child through this, but I'm not surprised they'd do it to an adult. It's all about making money with insurance companies....I'm so glad you got the right Meds approved! My husband takes Nexium and it is the only thing that works for him. Of the people I know with acid reflux, it seems like there's one medication and one only that works. Good job Mama Bear!

Kaitake said...

Goodness what a huge waste of space that company is! I'm so glad you've been able to successfully advocate for your son's health. It really makes me worry about those folk who don't speak up. All the best and well done on achieving such a good (and common sense) result! :)