I knew this wouldn't be easy, but I honestly did not imagine we would be trying for weeks and weeks and weeks to get Ash what she needs.
I also didn't imagine how hard it would be once our IND# was issued from the FDA.
I also didn't imagine that someone with the willingness to self pay would have people's heads spinning.
I also didn't imagine that no one has ever heard of a family self paying for this drug when insurance refuses too.
I also didn't imagine that once the number was granted, and the FDA was on board, that we would have to continue fighting red tape.
I just didn't imagine it would be this hard. I knew it wouldn't be easy, but I assumed we had crossed the biggest hurdle.
I was mistaken.
The requirements are that she be hospitalized for the first 48 hours and we are all on board with that. The physicians, hospital, and us. The company is telling me this morning that they are not allowed to dose a drug to me through home health and then allow me to take it into the hospital. So...nobody knows what to do. I find this very interesting because Ash is such a complicated patient that whenever she does go into the hospital 9 times out of 10 the hospitals don't have what she needs,( supplies, feeds, or meds) and so Dave and I have been asked to bring in our own supplies which we have happily done her entire life. Yesterday, when I left the doctor's office the plan was to have the Omegaven delivered to our home, call our physician, admit Ash in Shreveport, and then infuse the first two doses, discharge and come home.
So...this is not the end. Its really just the beginning of the fight for Omegaven.
They are sending our case to the heads of their company and trying to figure out what to do. I should hear from them with their decisions sometime on Monday.
My goal? To do everything humanly possible to give Ash the best life possible. We firmly believe Omegaven is the key to doing this. With or without re-transplant.