Thursday, October 29, 2009

31 for 21: So What's the Most Expensive Thing in Your Fridge?

I love to watch Top Chef - I love the thought of fine dining, although that usually isn't on our agenda with our lifestyles. But we do have something pricey in our fridge this morning! Are you thinking that it may be some fancy, delicious food product? Something so tasty that you would love to eat. What could it be? Is it food? Nope, it is four vials of ACTH. We received our delivery yesterday. At around $30,000 a pop, these vials are very very pricey. And we have four of them. There is tons o' money sitting in our fridge in the form of that medication. A medication that might not work. All that money sitting next to Riley's half drank juice pouch and Aidan's favorite condiment, ketchup. I looked at the vials sitting in our fridge this morning and couldn't help but to think we need to really clean out our fridge because that stuff is way too expensive to be sitting in that filth.

Doesn't this whole situation just make you feel like something is awry in our society that this could happen? If it wasn't for my hottsie tottsie insurance, Quinn wouldn't even get to try this treatment. A treatment that may or may not work. I really hope this works, but quite honestly I find it hard to be optimistic when at every turn we have had some crap come up out of nowhere.

What is with our society? This medication is so expensive. To receive SSI after age 18, Quinn has to have hardly any money in her name. She will need SSI or something at some point because she won't always have access to my hottsie tottsie insurance. So if you have DS, you need to be next to broke, but somehow manage to have access to very pricey treatments (that sometimes may not work). My head hurts. I think it really says something about the character of a people in how they treat those who have disabilities - and sure we here in the US have come a long way, but we have a long way to go. We don't put individuals with disabilities in institutions like we used to, but instead there is a large rate of termination for prenatal diagnosis and very expensive treatments when they are allowed very little money in their name.

On a nice, brighter side, please watch this clip of a girl named Kami - she is an inspiration:



  1. Wow, those 4 vials are worth more than my house! Unbelievable!

  2. I can not believe how much it is. Abigail got hers right before it went up. Her was $1,500. That was 4 years ago. Then it went up. She needed 1 1/2 bottles. I can not beleive how expensive that is. They are using ATCH to make money. Carol I hope it works well for Quinn. I think it took a little less then a week to stop seeing headdrops

  3. Hi Karyn--

    We have been right where you are with our little Hannah, who also has Down Syndrome and IS. There is hope--Hannah is living proof that you all will get through this and thrive!

    Please feel free to get in touch with me. I would love to talk to you and give you support.



  4. One little way around the money (but you didn't hear it from me!). Have people buy savings bonds. Use your name and SS# and also put Quinn's name on it. They will be hers but are "cashed" against your SS#.

    It's better than nothing.