Wednesday, July 23, 2008


My blogland friend, Danielle Foltz, will be testifying tomorrow in front of a joint economic committee about the price gouging going on at Questcor, the manufacturer of Acthar Gel (ACTH) for infantile spasms. Read the article.

Kaylee used nearly 4 vials during her treatment which puts the cost for her treatment for Acthar only at 92k. Not including the additional testing, hospital stay 2x's, neuro follow ups, and three other Rx's she was on during her treatment. Fortunately, we did not have to pay for the drugs themselves. They were covered by our insurance company after we exhausted another treatment option while in hospital. Because the drug was so costly, Kaylee actually had to suffer for three additional days of spasms until the insurance company could be satisfied that we had exhausted the vitamin B treatments before moving to the big guns, Acthar Gel. Then we had to go through a lengthy paper trail to prove to Questcor that we could not afford the drug if the insurance denied the claim. All while watching our tiny infant daughter have 7-10 clusters of 20-30+ seizures everyday. That is upwards of 300 seizures that could have rendered our child mentally and physically disabled just because of the almighty dollar. This is a scary thing for us having two other children with delays and disabilities. Fortunately, Kaylee is cognitively sound thus far, but she did not come out completely unscathed. She has a 4-5 month delay in her gross motor, or to the lay person, she isn't really crawling of walking yet at 12 months. She tends the drag her left side and tires quickly. She also is showing signs of some fine motor delay. To read more about our story click here.

Kaylee during her second hospital stay for a video EEG

Kaylee today

We realize that companies like Questcor are in business to make money, but 23k a vial?? I was nervous just handling the vial. Every time I pulled it from the fridge it was like I was handling a bomb, afraid to drop this tiny glass vial filled with liquid hope that our daughter would no longer have to suffer. I nearly passed out when two days out of the hospital we were forced to evacuate our home because of the SD fires which burned down homes less than three miles away from ours. The whole house could have burned to the ground, but as long as I had the vials on ice with a fridge at the other end, that was all we cared about. We were forced to scramble to find a hotel with a fridge, just so we wouldn't end up in a shelter with our very sick daughter who needed injections twice a day. We were terrified we would not be able to obtain more of the drug if the fires continued to burn out roads that would allow us to pick the drug up. We couldn't leave town either because of the uncertainty that we would not be able to obtain more. We were forced to stay put and let our sick daughter with a weakened immune system inhale ash and smoke while still having seizures, which continued in to week 3 of her treatment. Why?? Well, mostly because the drug is too expensive for any pharmacy to take the risk of carrying it. Even CHSD did not carry the drug because of it's expense and shelf life. Our supply had to be special ordered and brought to us through CHSD home care.

Thank goodness for strong people like Danielle Foltz giving the families affected by IS a voice. Please take the time to post a comment and show your support for Danielle and her tenacity in putting a stop to drug companies trying to profit at the expense of our children's health. To hear more about Trevy or Danielle's trip to DC, visit their blog.

1 comment:

~Mama Skates~ said...

i 2nd that - good luck girl!!!