This is what we keep hearing…We heard it in the summer when the FDA first approved Elaprase and we started trying to get it for Trey, and we’re hearing it now. Darned holidays!! Don’t they know they can’t go on holidays when my son needs ERT!?
I have been emailing our contacts in government every week since we made the decision to go forward with ERT. They say they appreciate and understand the urgency of the matter and “please know we are moving as quickly as we can.” For a parent waiting to begin ERT, you can’t move quickly enough.
This past week our contact in government told me he would be speaking with Shire (this past week) to make arrangements, and he would email me with the results of the conversation. When I hadn’t heard anything by Friday, I emailed him. He had not spoken with Shire. I emailed him back and asked why and apparently, “everyone is on holidays.” He said that he will be speaking with Shire next week. So, no ERT start dates yet. Looking forward to that.
I have also spoken with Dr. Stockler and she wants to wait until we get an ERT start date to organize a port placement surgery. Once we have a date, she will organize a surgery date. If the surgery is not able to happen before ERT begins, she says it’s no big deal to do the first infusion(s) through IV. For those who don’t know (and as far as I know with my very basic understanding), a port is a (hopefully) permanent device placed just under the skin that is used instead of IV during infusions. It is easier and less painful to access for Trey, than using and IV, since he will now regularly need to be pricked.