I said I was going to do better at
blogging. Obviously I lied. But I do have exciting news to report.
The good news – the best news ever – is that Colby has received
his 5th Spinraza injection. He was due for it on March 15.
There were issues with Colby's insurance. It changed on February 1st
to United Healthcare (UHC) - the suckiest insurance on the planet.
Colby was denied Spinraza twice. Then the company that makes the drug
offered to put Colby in their free drug program, meaning Biogen would
give Colby the drug at no charge for a year. That's over $300,00
worth of medication being given to Cincinnati Children's! But
apparently Cincy hasn't decided whether or not they will accept
Biogen's free drug program. Ok, I totally don't understand that. It
wasn't just Colby who was getting the screw job on this issue. There
were 3-4 patients who were also affected by this UHC denial mess. I
was very disappointed in Cincinnati's inflexibility, along with them
seemingly making no hurried attempt to work on this issue for the
patients who needed a quick resolution. So, there we were. A company
was willing to give Colby the one and only drug that would help his
SMA, yet Cincinnati Children's wouldn't accept it for whatever
reason. Talk about frustrated.
Then enters the family liaison
representative from Biogen. She is A-MA-ZING. She works with SMA
families and is a crucial link between Biogen and the patients who
need this drug actually getting it. She was able to help me switch
gears and think outside the box. Long story short, Colby received his
Spinraza injection here in Louisville at Norton Children's. I was
amazed at how quickly we were all able to pull this together. Colby
had an appointment with the Louisville neurologist. Then he needed a
CT scan and x-rays. While we were there we met the radiologist who
would be performing the injection. Then we got it scheduled and bing,
bang, boom, Colby got his Sprinraza this past Thursday. Incredible.
I'm so, so, so thankful Colby was able to get his Spinraza within a
reasonable amount of time from when it was due. The next injection is
due in August, so we can put this worry on the back burner for now.
So I need to clarify something. There
was another local man with the same name as my dad. He and my dad
lived maybe 6-10 miles apart. Apparently this other man had a wild
side and ended up in jail a couple times. When my dad was still
teaching, one Monday morning he had to explain to the principal of
his building that he was NOT arrested that previous weekend. It was
the other guy with the same name! Well, this gentleman passed away a
couple of weeks ago. I assure you it was NOT my dad! My dad is very
much alive. I've received a couple of condolence calls. Again, it's
NOT my dad. Yes, my dad has had some health issues lately, along with
a couple of hospital stays. And while I appreciate people reaching
out to give their sympathies, again, it's NOT my dad. Nothing like
some total confusion thrown into the mix of my already stressy life!
I'll end with this cute Colby story. As
we know, most of the time he doesn't use his eyegaze to communicate.
Watch YouTube, change the TV channels, sure, but proper eyegaze
communication has never been Colby's strong suit. His eyegaze was set
up Friday, the day after his Spinraza procedure. His nurse asked him
how he was feeling. He went right to his feelings page and said,
“brave.” Damn skippy you're brave, Colby Michael. He's the
bravest, strongest, most stubborn, wonderful human I know! Sounds
like he has some sense of how proud I am of him. Warmed my heart when
he said that.
