Today has been an odd day.As most of you know, this summer has been spent battling for a CGM for Sáin. The battle began back in May (before our trip to Toronto) with a letter of medical necessity and has travelled through multiple denials, multiple appeals and communication with Good Morning America. We were set to interview with ABC on Friday but, through a long series of events that I would write about but I am too tired to, it seems Aetna (Sáin’s secondary insurance through her dad) may pay for Sáin’s CGM. At least that's what the two unsolicited phone calls today from Medtronic told me.
Needless to say our ABC interview is postponed until after we receive a denial from Aetna (or, God forbid, an acceptance letter!) The ABC folks were wonderful about everything and seem genuinely happy that Sáin might be getting her CGM -- despite what some people told me, I found media folks to be great. (They are still interested in our story if we get a denial from Aetna, too.)
Sáin took the news very well and was more excited at the prospect of getting a CGM than disappointed with not being on GMA. This proved to me more than anything how much she wants this device.
Honestly, I am having a bit of trouble. I am truly very, very excited with the prospect of coverage but I am disappointed by large number of people that have come out of the woodworks to support us only after ABC got involved.
For three months I got very little support from some people that really should've (in my opinion) been helping and now everyone and their brother wants to help me. (It got so bad today that I actually turned off my cell phone and, if you know me at all, you know I am one of those annoying people who always has my cell with me.)
Where were they when I asked for help? The only place I found real support was here, online. Out there in the "real world" I felt alone. Why am I suddenly important enough to help?
At the end of the day all that matters is Sáin getting her CGM but I don't know if I will ever view things the same way again. This disease can be very disillusioning.
(The picture is what I see when sitting at the computer -- (left to right) iPod box, glasses that my dad uses when he plays games on my computer in the mornings when I leave for work entirely too early and he's kind enough to come over, a Diet Mountain Dew (if diabetic parenting were an extreme sport, I would be a shoo-in for an endorsement deal) and the "quick setter" for Sáin’s pump infusion sets with my reflection in the background. I look tired.)
1 comment:
I would like to say that I too am more pleased that Sain is getting a CGM covered that the GMA gig, but really I think in either case, it is a battle worth announcing to the world.. like Sain, there are other kids out there, with parents unlike you who are not able to fight.. to keep fighting for coverage.... and for those, we should speak up. I to this day regret not letting the ADA sue my sons public school for not leting him feel safe and not setting up a plan of dealing with a diabetic child in their school.. I really tried to get him back into public school this year, and again, was told they would not make any acceptions ... I backed off, again... with some of my family even saying i did the right thing, backing off so i could focus on my son and finding him a safe place in a different school... and i wish i had it in me (Which i usually so) to take it all the way... So instead of saying.. until next year.. I stand with you GMA or not... to let insurance companies know how much our kids need this... we have one and are waiting to be reimbursed.. and it has alarmed more than a dozen times, and let me tell you.. that in itself is worth its weight in gold.. and also the data that comes off it is so valuable to the dr's to help with basal rates...
So don't take offence if it is with GMA that people spoke up, i don't think it is about the glory, but the win.. that someone has listened.. and that is rare, and does not happen often, and you deserve kudos for this.. for taking the time, finding the contacts and making them listen.
and if i learned anything from the first years battle with the public school, as soon as there was about to be 'coverage' there was resolution... and then they pulled back and it was too late.. so never give up the fight... (which the little of know of you, it sounds like you wouldn't) for Sain, for Gloria for all the kids out there who deserve a little helping alert... to save us from disaster.
I hope that made sense... it was a long nite for me too... and ton's of other parents of diabetics out there!...
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