Synagis run-around

Heinz needs to get some medication to save his wife's life. The pharmacist won't sell it for less than $2000 because he wants to make a profit off of his discovery. Heinz only has $1000 and the pharmacist won't budge, even though he knows the wife is dying. The question is if Heinz should steal the medication and why or why not.  This hypothetical moral dilemma is multi-faceted with myriad solutions, none of them right or wrong.

I have felt an awful lot like Heinz the past few weeks trying to get the Synagis shot for Hannah.  Synagis is an RSV prophylactic shot that is given to medically fragile babies during flu season.  Hannah qualifies for the medication because she has "a congenital anomaly that impairs the ability to clear secretions from the upper airway because of ineffective cough," and she is "at risk for a prolonged hospitalization related to lower respiratory tract infection."  Hannah was already hospitalized for influenza and needed to be on oxygen for 3 weeks afterward. I'm not sure how much this medication actually costs, but I've been told $2000 and I've been told $15,000.  Either way, the insurance company recognizes that the preventative medication is cheaper than another hospitalization.

In clinical trials, 10% of placebo recipients were hospitalized for RSV, and less than 5% of Synagis recipients were hospitalized for RSV, meaning that the medication cuts her chances of getting RSV by more than half.

This is on our front door.

We started this process on January 12 and it has been a total circus trying to get this prescription filled. We've had an especially dangerous RSV season, and Hannah's growth already took a hit with 2 respiratory viruses in a row.  What if she were to get sick while we were waiting?  We have hardly left the house at all, and I have been "screening" every visitor that comes over.  I've purposefully kept Lexie home from nursery at church, and opted not to take her to the mall or rec center or McDonald's play place even though she desperately needs to get out of the house and have a change of scenery.  Lexie and I are driving each other bananas. 

I had no idea how hard it would be to get this shot, and I have been stir-crazy for three weeks! Because its so expensive, there are quite a few hoops to jump through. Insurance has to have documentation from the physician of why the medication is necessary, and the pharmacy has to have prior-authorization information from insurance before they can proceed with dispensing.  Everything has to line up perfectly, all at once, in the right order, and not on a Friday because you can't overnight ship a refrigerated medication on a weekend. There's no checklist for worried parents to use to streamline this process.

It took an entire week of waiting before we even knew we had the wrong pharmacy, and then another week for the insurance company to catch up.  If I hadn't been making phone calls to insurance, doctor, and especially pharmacy on an daily basis, it might have never happened.

We started out on the wrong track, but here's a sort of check-list of how to get started and how our particular pharmacy really convoluted this process that I shall call:

THE SYNAGIS RUN-AROUND

First of all, make sure you know which "specialty" pharmacy your insurance company prefers to use for fancy medications like this.  Have the doctor send the prescription to this pharmacy and to the insurance company. It will still take the pharmacy a full week before they actually know who you are when you call. Maybe call the pharmacy every day and ask the "status" of your prescription. They will tell you they are waiting for information from the insurance company.  Meanwhile, the insurance company will automatically deny the prescription, and will say they need more information from the doctor about why the medication is necessary. 

Call the insurance company.  It might take them several days to realize that they need more information from the doctor.  They will say that they sent, or will be sending, a letter or fax to the doctors office asking for patient chart information. Call the doctors office and tell them to look for the letter from the insurance company and respond with the requested documentation. Then call insurance back to see if they got the info and ask them how long the review process will take before the medication can be authorized. They will probably say 2-3 days.  But it might help if you call them every day to ask the "status".  Also ask them what the next step will be.

Once the insurance company finally has the documentation they need, they will write a letter to the prescribing physician and it will have a "prior-authorization" number.  As soon as the insurance company has approved the medication, make sure they send this information to the physician. Then the doctor's office has to call the pharmacy and give them the prior-authorization information.  I recommend calling the the doctor's office to make sure they got it and remind them to call the pharmacy.  I asked insurance why they can't call or send this information straight to the pharmacy, and they said it has to do with privacy laws.

Side-bar: Every time I spoke with someone from the pharmacy about each step, I asked "how long should I expect that to take?" and usually they said 24-48 hours.  I personally think that is ridiculous. With this many steps and hoops to jump through, that is way too long.  If you had a regular prescription and a local pharmacy or if you were in the hospital, your prescription would be filled the very same day. I understand that special insurance authorization makes this process longer, but there is no reason it should take more than one week, TOPS! 

(We've already been working on this for 2 weeks at this point).  Now the pharmacy will the call the parent for "permission to ship" the medication.  I've already implied that his pharmacy is incredibly incompetent; when they called the parent for "permission to ship" they called and left a voicemail for my mother...who lives in Chicago.  Ummmm....okay?  How did they even get her number? I'm pretty sure she is listed as an emergency contact for us at the doctor's office, but I did not give that information to the pharmacy, so why would they have gotten it from the doctor?  *scratches head*

So, rather than calling me, I called them and asked, "What's the status?" and they told me they had already called the parent and left a message. "Uhhh, no you didn't..." says me.  I eagerly gave my permission over the phone.  They even asked me, "What day do you need it by?" and I legit said, "I needed it a week and a half ago." (So if I hadn't called them that day to ask the status, would the whole process have stalled until my mom-who was travelling and out of range-checked her voicemail?)  I asked them why they needed to call the parent for permission to ship. Of course you have my permission to ship! They said that sometimes the parent has changed their mind, or the child isn't going to get the shot after all because he or she already has RSV (GEE! I WONDER WHY!?!).

Then the pharmacy called the doctor AGAIN to set up the shipment. This means getting the address and business hours. The medication is refrigerated, so it has to ship overnight and be received the next day, which obviously can't be a weekend. They will also get the patient's weight, since the medication dosage is determined by weight. (Don't you think this process could be streamlined if all this information would have been collected at the very first encounter??)  Now, if the pharmacy calls the doctor's office and leaves a message, the ball is now in the receptionist's court again and the office has to call them back again... Usually, I would call the pharmacy and ask today's status and find out that they left a message, then I'd have to call the doctor's office and ask them to please return the message. Also, if the patient's weight has changed, the doctor has to send a new PRESCRIPTION!!! further frustrating the process, because now they have to call the parent and get permission to ship again.  Go ahead and ask me how I know...

Finally, a conference call. I got the pharmacy and a helpful nurse from the doctor's office on the phone at the same time and I didn't hang up until I knew that they had my permission to ship, the doctor's office had given a verbal confirmation of shipping address, business hours, child's weight, and dosing amount, and I was confident that all was in order to ship that day. This was Wednesday, January 31. I was told that the doctor's office would open the package immediately and put it in the fridge, and then call me to bring Hannah in for her shot. I wasn't about to count my chickens though, because I'm sure they could find some other way to screw this up, like shipping it to my house when I'm not home, or my mother's house, or putting the wrong name on the medicine, or some other unknown abomination.  I even called the pharmacy back later that evening to see if they had a tracking number for me, but they didn't yet. 

Proof. That is one hard-earned bandaid!

The next day, I waited anxiously all day for the call, not entirely certain if it would really happen. Finally at 3pm I called the doctors office to see if it had been delivered and they said no.  So I called the pharmacy for a tracking number, and they told me it had been delivered at 9:45 am and that someone named Clark had signed for it. I called the doctor's office again and sure enough, it was in the fridge with Hannah's name on it.  I was there within half an hour, and on Thursday, February 1, a full 3 weeks after the prescription was made, Hannah finally got her Synagis shot.

If every step takes days, even with daily prompting from a proactive parent, I can't imagine how long this would take if I had not been involved.  Each step would have been buried on someone's desk for a week at a time.  It has been completely ridiculous!  When you have a vulnerable baby-and a stray sneeze in her direction could send her to the hospital-you have to be proactive.  You want this medicine ASAP! Not after the spring thaw...  

Here are some tips if you are going through this process, and I hope you have a less incompetent pharmacy: Be as sweet as pie. Say please and thank you. Ask the name of the person you are talking to. Write down all the phone numbers you are calling, what days and times you called each place, who you talked to, and any new information you learned or information you need to get from someone else. You will spend a lot of time on hold; I recommend a hands free headset.  An impassioned monologue and some hearty tears on my behalf helped "escalate" our case. Let them hear that baby crying in the background. Make a friend at the doctor's office who knows the situation and can stay on top of the process with you.  (Thank you Linda!)

I count over 30 phone calls and over 4 hours of phone time (much of the time on hold).  This had better be more smooth next month when we get the second dose!! As my mom put it, when all is said and done, you will have made thousands of dollars per hour when you take into account the value of the medicine and the number of hours spent on the phone trying to get it. 

Lastly, give a big sigh of relief and snuggle that baby. And cover your cough, for crying out loud!