Did you get the name and phone #?

September 21, 2007 at 10:53 am

I would also double check w/your doc – that HE DID release that info….

Docs should have to report ‘adverse reactions’ to blood products…per the FDA. But when it’s done in a hospital [the hosp has to report to the doc w/in X days and the doc has to report to the FDA w/in Y days, then the patient w/in z days…etc]. It’s usually not done tho. I learned that the hard way? Hospital either infused me with a bad batch [one kept at room temp too long] or substituted a non-prescribed brand [again notices SHOULD, by law be sent to all concerned but aren’t].
Web up ‘FDA Blood Products’ and you will learn more than you will ever want to know about regs for the processing and distribution of IVIG, weakest link is from the pharmacy to the patient…Strange that.

OK, IF your doc did report it…remember those ‘medical release forms’ you sign almost every time you go to a doc’s office? Well, that enabled the doc to release info to ‘approved’ sources. Also the doc’s office should have notes regarding the validity of that contact. You want to be sure that the person who called is well ‘pedigreed’? Not some researcher who’s lurking on the boards or the like and ‘fishing’ for patient info fodder.

Check w/your doc…put your mind to ease. It’s my understanding that the FDA ‘usually’ contacts folks by LETTER, paper that goes thru the mail….for those privacy reasons exactly. Let us know what all happens!