We are trying to get the right pump for Fiona this week. Accredo called a few days ago and I went over all of the options with a pharmacist. After going through everything he told me that they didn't have any other options, and that none of them would be good for Fiona. Yesterday the manager of the pharmacists called and told me that she thought they could get the small pump for Fiona, but she had to look into it. She called back and said that they have it and will be sending it to us. I'm not holding my breath. A member of a support group for immune deficiencies told me that Accredo was supposed to send her the same pump, but once the head of nursing for her area found out the order was canceled along with the order for her medicine. They don't offer training for the pump we want, which is fine, because we used it for a few months.
We are in touch with someone from HR, she is trying to work everything out. Our three main complaints about Accredo are the pump, the separate copays for bottle sizes, and their lack of payment plans. One of their billing reps told me that until an account is paid in full they won't send more medicine. We are fortunate that we could pay for the first month of Fiona's medicine, which was $2,700. We hit our deductible last month, so until we reach our out of pocket we have a $150 copay. The bottle size issue will also be resolved soon. Accredo charges a copay for each bottle size. Right now we are getting 20, 1 gram bottles for $150, which means I have to draw from 5 bottles each week. We used to get a 1 gram, and a 4 gram bottle for each week, and I only had to draw 2 bottles each week. If we wanted 4, 1 gram bottles and 4, 4 gram bottles we would have to pay $300 per month. Ridiculous!
Fiona is still healthy. We saw our local doctor yesterday. We will be getting the stuff to draw labs for the next set of tests this week. Because they are unusual tests they need to go to research labs, which will be a challenge. First Cincinnati has to figure out where to send them, we have to have them drawn and sent to the labs, then Cincinnati has to figure out how to get the results.