AW: Best day ever!!

KYmama9286 · April 2011

I just have to AW this because I am SO stinkin excited I could seriously shout from the rooftops! Nicholas has gained 2 whole pounds since January (HUGE for him especially since he was dropping off his own chart which was a really bad sign) and the even BETTER news is that we FINALLY got coverage for his growth hormone therapy!!!!! He had been denied 4 times for the most asinine reason ("there isnt sufficient evidence that he wont have catch up growth by age 4" uhm age 4 is very arbitrary, he didnt gain weight for 3 months in a row and he has a little something called RSS!!!!) Either way our awesome endocrinologist and endocrinologist nurse fought with them for a few hours on the phone and got coverage!!!

The funny (kinda) part was that DH and I were driving to Nicholas' weight check appointment and I just lost it. I was sobbing about how unfair it was that because of insurance our son was going to miss out on a treatment that could seriously change his life (without GHT the average adult male height for someone with RSS is only 4'11"-- legally considered a little person). The thought that there was treatment available and we simply couldnt have access to it was breaking my heart. DH finally calmed me down and we go to his appointment and in the middle of the appointment we get the call that they finally got coverage!! We are so excited and I just had to share this AWESOME news!

Now our fingers are crossed that our copay is only $60/month like we originally thought and not the $215/month that we were quoted after getting approval. At this point I am just so happy to get coverage that I will gladly pay the $215/month if it means that Nicholas has a chance to get healthier and grow :-)

MrsFoltz · April 2011

Yay! Great news!

kristinleigh · April 2011

That's so great!

Ttimes3 · April 2011

That's fantastic! Hooray for modern medicine.

sistrkate · April 2011

That is wonderful! So happy for you all

stillwaiting12 · April 2011

Awesome news! I'm glad N will be able to get the therapy he needs to thrive. So happy for your family.

PolarBerry · April 2011

YESS!! I am so happy that nicholas will get the treatment he deserves! Yay for awesome doctors and nurses too who are fighting for your little guy!!!

little-peanut · April 2011

Yay! That's awesome news!

escape1st · April 2011

That is fantastic news!

buckeyethor · April 2011

Grow Nicholas grow!

Mommy2Max · April 2011

Such good news!

Also, Max was on a growth hormone called Nutropin. I am not sure what they will put Nicholas on, but when Max was on it our doctors were able to get us a Nutropin gift card that paid for the medication up to a certain amount per year. It was a life saver. Talk to his nurse about it and see if she can look into it. I would imagine there is a chance there is something for other medications as well as the Nutropin.

Beth

KYmama9286 · April 2011

Mommy2Max:
Such good news!

Also, Max was on a growth hormone called Nutropin. I am not sure what they will put Nicholas on, but when Max was on it our doctors were able to get us a Nutropin gift card that paid for the medication up to a certain amount per year. It was a life saver. Talk to his nurse about it and see if she can look into it. I would imagine there is a chance there is something for other medications as well as the Nutropin.

Beth

Thanks for the suggestion Beth-- they are putting him on Humatrope. We've been working with the HRC and they said that once we find out what the copay will be after the 1st claim is put through than we can apply for co-pay assistance through Eli Lilly and that usually can help offset the cost a decent amount at least for the first year. Chances are Nicholas will be on this for the next 12-15 years, possibly longer, so any help we can get will be MUCH appreciated!