change in self-administration

[Guest guest]

Accredo-Novafactor is now telling its patients that the FDA is making

them strongly encourage self-injectors to get injected at the doctor's

office, to the point that I had to pretty much promise the pharmacist

that I'd do so - after self-injecting for almost 5 years.

I told the pharmacist about this group and that there's only 3 of us

self-injecting. She said there had been a recent trend of docs

starting to allow self-injecting and at-home deliveries and she said

she guessed the FDA wanted to stop that.

The pharmicist and I discussed some holes in the FDA black box

provisions and recommendation. 1) that we don't understand why the

advisory did not include a recommendation that patients be given EPI

pens. 2) the fact that the Xolair population is highly allergic and

how do you determine that Xolair caused an anaphylactic reaction hours

later AFTER the patient has been exposed to so many other things. 3)

whether or not it was based on patient direct reports or physician and

ER reports - that was her question, and it's a good one.

So I called and left a message for my doc today about this. What a

pain. Maybe they'll let me come give myself my shots in the office

when I want to.

Addy

Group co-owner