Thursday, May 16, 2024

Thursday, May 16, 2024

Tonight's picture was taken in May of 2009. Mattie's community gathered around the school's track and hosted and an amazing Mattie March! As you can see, Mattie was watching a magic show with his friends. Mattie learned to love magic, and the head of his lower school, Bob (The Magic Man), visited Mattie practically weekly in the hospital and taught him the art of magic. I can't tell you how special Mattie felt, as he was able to learn many tricks and perform them for his health care team. Magic made Mattie feel unique (as most of the other children in the hospital couldn't do this!) and gave him pride and happiness. Bending down next to Mattie is Brandon. Though there was a ten year difference between these boys, they were diagnosed around the same time, and were the best of friends. In fact on the day that Mattie died, Brandon came to the hospital and sat with us in Mattie's room. Literally we had an impromptu wake with around twenty people in the room with us, surrounding Mattie's body. Brandon was a kid himself at the time, but he wanted to be there and was a loyal friend until the end. I learned so much about friendship through Mattie's cancer journey. 

Quote of the day: No matter how bad your heart is broken, the world doesn’t stop for your grief. ~ Faraaz Kazi

As a reminder, this Sunday, May 19th, Mattie Miracle is having its 15th anniversary Walk! The event is virtual. It is not too late to get involved. Sign up, support a walker or team, make a donation or purchase raffle tickets. Check out our website! Despite all that I have going on, we have raised over $75,000 so far. help us get to our $100,000 goal! 

I mentioned last night that I received an email from the infusion center where I received my Prolia injection in March. The email contained an invoice for close to $2,000! Needless to say, I lost it. Particularly when the infusion center told me that I wouldn't be paying more than $275. A big difference! After all I purposefully decided not to get these shots at my doctor's office, because the cost was going to be much lower at the infusion center. 

I am facing many firsts over the last eight months. Today I tackled this billing issue. I started by calling the infusion center and understanding their billing process. I learned that they submitted the claim to my insurer as a medical benefit. When I used to get Prolia through my doctor's office, they billed it as a pharmaceutical benefit. The doctor's office assured me that the drug would be more cost effective to me if I went to the infusion center. Why? Because the center bills for the drug through major medical. 

Any case, the infusion center explained the process and also explained my insurance plan to me. I basically have to meet a $4,000 deductible first, before the insurer will pay for 90% of the drug. I did not know this, but the infusion billing department truly helped me understand the two tiers of billing by my health plan. They also encouraged me to reach out to Amgen. I have an Amgen co-pay card. Like most patients receiving Prolia, the co-pay card is a lifesaver. Amgen will pay up to $1,500 a year for these injections. That basically helps to cover the cost of at least one of the two required yearly dosages. 

I called Amgen today and the fun began. Amgen said that I already used my co-pay amount for the year! I told him that wasn't possible. So he put me on hold to get more information. Turns out that Amgen sent my $1,500 co-pay to my insurer's specialty pharmacy. However, the infusion center does not work with this specialty pharmacy. So in essence, my $1,500 was lost somewhere in the specialty pharmacy system. Therefore once off the phone with Amgen, I called the specialty pharmacy. I assure you this was an hysterical phone call. I spoke to two different women. Both of whom told me that there was no way that my co-pay would have been used by their company if the script wasn't filled. They wanted to dismiss me and to call back Amgen. 

I wasn't letting accepting this or taking no for an answer. I insisted that they help me find this money! I was placed on hold twice, for long periods of time. But I think at the end of two hours, they found the money and submitted the reversal of the claim. They told me to give it 24 hours for the money to go back to my co-pay card. Needless to say, tomorrow I will call Amgen to confirm that the money is back and then figure out how to get this co-pay amount over to the infusion center. Literally I am getting an education on the whole process. What I do know, is that to get this addressed required patience, time, persistence, and asking a ton of questions. 

My three things that I appreciated today: 

1) I saw a playful Jack Russell Terrier while at Starbuck's today. This pup reminded me of JJ, our resident Jack Russell who lived near us in Washington, DC.

2) Starbuck's was playing 80s music today! It brought me right back to college. Happier times. 

3) Interfacing with several helpful people today who patiently answered my questions and tried to help me with my astronomical Prolia bill.