Frustration doesn’t even come close to describing the level of emotion I have been feeling lately.  The journey to getting Alexander treated has tested our patience, wrecked our emotions, and induced anger towards an overly complicated and cruel process.

We were elated to find out the FDA approved Spinraza for the treatment of SMA shortly before Christmas.  Early in January we had an appointment with our neurologist about seeking the drug for him.  We were initially told they wouldn’t be able to help us, at least not as quickly as if we sought treatment at a place that was already in the process of becoming an administration site.  Surprisingly, a few days later we were told that the hospital was in the process of becoming an injection site and Alex would be one of the first 3 kids in WV to get treatment after approval.  We then waited…and waited…and waited.  Each day passing by without any answers.

Finally in mid-February we discovered that the hospital had been approved to become an injection site.  SUCCESS! (?)  Their next step was to figure out how to write the prescription for the vials and they ultimately determined that 1 years supply per prescription would be appropriate.

Next hurdle: getting our insurance to cover a million dollar prescription. Easy, right?

A series of unfortunate events

1. Missing Signature

The nurse at the hospital sent in our start form without our signature.  The start form (which is essentially the prescription) requires our signature so that the drug company can freely contact our insurance on our behalf.  Frustrated with no movement or word from anyone, I decided to call the  specialty pharmacy directly to see if anything had changed or if they had any news of our prescription.  To my surprise, we were told that they had not received a prescription for Alexander.  Excuse me?!  Cue panic and anger for me!!!  I immediately made some more calls to find out what was going on, and that is when we determined that the incomplete start form was holding the process up.  How?  I had specifically asked if we needed to complete this and was told not to worry!  Thankfully, the lady on the call said that we could complete the form online, which leads to the next problem.

2. Technical Difficulties

I go to the website, type in all of Alex’s information and click submit.  After clicking, I was given an error message saying that the patient could not be verified!  So I call Biogen (the drug company) and they tell me no worries, there is another online form they can email me a link to and I can sign electronically that way.  I proceed to the link, type everything in and click submit.  I get the same error message.  I am beyond frustrated at this point.  I call up the drug company and explain what is going on.  I have the person on the phone with me, who just assumes I’m typing things in wrong, attempt to complete the form using Alex’s information to see if she gets the same error, which she does. She seems surprised and said that there is some glitch going on with his account (Of course there is!).  So I am then provided the start form by e-mail to complete and e-mail back.  They don’t typically process them that way, but we were out of options and in a hurry to move this along.  I finally received a call verifying they received the signature and could proceed with starting the process.

3. Party of 5

Every few days I’d alternate and call each involved party to check on the progress, being told something different in every instance.  It is important to mention that there are 5 parties involved with getting this drug: the drug company (Biogen), the specialty pharmacy (Accredo), health insurance (WV Chip / Molina), medical pre-authorizations (Healthsmart), and the doctors office (Ruby Memorial) that prescribed it. The drug company has a dedicated Family Access Manager (FAM) that coordinates between parties and interfaces with us.  We were connected with our FAM just 8 days ago.

I’ve mostly been in contact with a nurse at Ruby Memorial Hospital.  She submitted a prior authorization for the medicine to the wrong insurance company initially (the insurance we had in June of 2016).  Then she said that she has been getting passed around between parties and given the run around with our insurance company.  She said they keep transferring her between people, with each person saying they don’t handle prior authorizations for specialty drugs and that someone else would need to assist.  She would then get transferred into oblivion, reaching 9 times yesterday.

She said that our neurologist suggested switching Alexander from WV Chip Premium (Medicaid expansion) to straight Medicaid to alleviate all of this hard work.  Wouldn’t that be grand?!  We have been denied Medicaid for Alexander.  They agree on his diagnosis of being physically disabled but we are outside of their income guidelines.

Finally, she asked me to call my insurance company directly to get a name from them for the person she needs to send the prior authorization to.  I had two phones on hold while Jamie called a different agency on his line.  We were desperate to reach someone who could get us moving again.

It has been so frustrating waiting forever, thinking you are going to be given an answer only to find out that you aren’t even at that point yet, you’re still two steps behind!


We eventually got some names of people for Ruby Memorial Hospital to contact, so I’m hoping they get what they need to send in Alex’s information for the approval/denial.  We are expecting to be initially denied by WV Chip / Molina and will promptly submit our appeal for approval immediately after.

Each day that passes is another day of muscle waste, another day of emotional agony, and another day we risk Alexander getting sick during Flu-season!  This entire process took only a few days for approval/denial for the two other families in WV I have been in contact with.  Even though we were the first with an appointment post-Spinraza approval, we are still several weeks in now and still have no answer!  I just want to stomp and scream and cry!  Why does it always seem a more difficult path for us?!  There is a medicine sitting on a shelf somewhere that could dramatically improve Alexander’s life, but it is being roadblocked by clerical errors, paperwork, and agency representatives that don’t want to deal with it.

We are talking about my son’s future, take it seriously people!