Thursday, March 21, 2013

No Sleep Till Synagis!​

By Jacob Hedgespeth

As we all know Conor was a preemie and with that comes the fear of RSV. Conor was at all high risk levels etc… What’s that Mr. Insurance man? Conor turned 3 months old before RSV season starts? Yeah, you’re right 72HRS BEFORE! This was mind blowing to me. My little guy was on lockdown, we went nowhere, and I mean nowhere. But according to my insurance company 72hrs made Conor’s immune system full term and no worries.

So the second biggest battle I have faced as a preemie dad begins, I have lowered the cannons, and hoisted the flag. I declared war on Express Scripts, and I would not give up. I got the first denial on October 9th of 2012 and sent my appeal letter on October 15th 2012. My letter was stern and very matter of fact. My son was a preemie, he was at risk just due to his weight, and gestational age bottom line any human being would notice this and approve is. As most preemie parents know insurance companies don’t have heartbeat, mindless drones work for them. They see black and white and don’t see outside the lines. I let Express Scripts know that if I didn’t have a response within 5 days the Kentucky Insurance Commissioner’s Office would get involved, and I don’t make false promises when it comes to my son.

​Days came and passed and no response, so as stated I contacted the Insurance Commissioner and let them know what was going on, In the end we were assigned 2 investigators and 1 secretary due to the nature of the problem and the risk factors Conor faced. I thought to myself if they see the importance of this, why can’t my insurance company, who I pay money to every single month, see this!? I was told by Express Scripts who finally decided to contact me that I needed a Doctors statement that Conor needed Synagis and its medical necessity. Awesome, no big deal, Conor’s pediatrician was upset he wasn’t approved so she will help. WRONG! Her office told me he didn’t meet the guidelines. All because of 72 hours everyone felt Conor would be okay through RSV season.

​I contacted Neonatal follow up to get help on the letter, in the mean time I faxed Express Scripts all of Conor’s hospital information including his admit summary, and discharge summary along with his $107k hospital bill. I did that because this is what they faced paying out again if Conor was admitted back to Kosair Hospital. Back to my phone call with Neonatal, I spoke to a nurse who handled Synagis injections, Her words “Well, if they have denied you an appeal will be a waste of time” my response “Excuse me? Nothing to do with my son is a waste of time let’s get that straight.”

​So there I am, with no help from my son’s doctors I am in this fight alone. I turn to social media, I burned Express Scripts up on twitter. First tweet “@ExpressScripts My preemie was denied synagis becuase he turned 3 months 72hrs before RSV season. Do you guys have no hearts? #MadDad” I was in form to send a tweet every hour on the hour to make a point. Second tweet went out with a picture of Conor in his incubator. I got a response. But no victory, I talked to someone who really couldn’t do anything.

​Conor’s Day of victory came on December 12th 2012. My HR department at the Commonwealth of Kentucky called me. They had been made aware of the problem I was having and wanted to help. I was contacted by the HR manager of my cabinet. She told me “Oh honey, this is wrong very wrong. We will override this today and get your son the shot he needs.” I broke down in tears. I had won, I faced a giant and brought him to his knees. Be it only one 100mL vial of synagis that wasn’t cheap I got it, My son would have a little protection from RSV.

​The main point here is if you are having trouble getting approved for this very much needed shot for a preemie DO NOT give up. That is what they plan for you do; you owe it to your child to fight, and fight hard. I would be willing to give advice or help to anyone who needs it on this topic. As now I am a pro in this field and never wanted to be!

Below is my last tweet sent to Express Scripts.

“@ExpressScripts since my employer is self insured the denial for #Synagis was overridden. After a 2 month battle, Conor 1 Express Scripts 0”


  1. Fight on man! Love what you said about 'nothing to do with your son is a waste of time'. Hope your son is well.

  2. Love this...great job!!!

  3. We are facing the same thing because of 5 days for our 32 weeker. Good for you to keep fighting!