Patient Notification System

Texts That Protect

If something big were happening, you’d want to know about it right away, especially if it concerned the factor you or your loved one uses. The Patient Notification System (PNS) is a free service that will notify you about any withdrawals, recalls or warnings concerning your specific product, and even ancillaries. Are you signed up with it?

Launched in 1998 by the Plasma Protein Therapeutics Association (PPTA), a group that is supported by manufacturers of plasma-based products and recombinant products, this system has diligently sent out hard copy, telephone and email notices of any changes in your prescription drugs.

There was a time in the early 2000s when these were frequent, as there were shortages, plant shut-downs, recalls, products taken off line, and more. You can imagine that the specter of the mass HIV infections in the blood supply in the 1980s led to this unique and vital service.

There’s good news now: stringent manufacturing practices, better donor screening and genetically-engineered products means that notices of safety concerns are almost a thing of the past.

Are you signed up? You should be. It’s free, confidential, and now fast! Just recently, the PNS added notifications by text, probably the fastest route these days.  You will want to be up to date on any changes in the product you use.

Sign up for the PNS at www.patientnotificationsystem.org or call 888-UPDATE-U.

Register with PNS Now!

It’s been a long time since I’ve seen a withdrawal or recall of factor. About six years ago we had a lot of them, and not everyone got word that their particular product was recalled. Then along came the Patient Notification System (PNS), a program that allows you to register to get alerted via email, telephone, fax or snail mail to any recalls or withdrawals. It’s a good time now to ask yourself if you have registered with PNS.

Here’s why: Just this week we had a voluntary recall of factor.

NHF’s Medical Advisory #407 of August 20 announced that CSL Behring initiated a voluntary recall of four lots of Monoclate-P
that were distributed beginning on August 4, 2008. It reads: “This action is being taken with the knowledge of the United States Food and Drug Administration (FDA). These lots are being voluntarily recalled as a precautionary measure because they do not meet the potency specification when stored for three months at 5 degrees C. No specific safety issues have been identified and neither have adverse incidents been reported. CSL Behring is requesting that the use of these lots be immediately discontinued and the product be returned to the company.”

When you register with PNS, you will be notified only about the product you use, so if you change brands, you may need to update your registration. If you are not registered, you may not hear at all about recalled brands. Please sign up with PNS today. Go to http://www.patientnotificationsystem.org to register. Don’t be the last to know!

Needless to say you should also register with NHF’s eNews, which will keep you updated with recalls and all news related to hemophilia.


Book I Just Read
Fifty Things to Do When You Turn Fifty by Ronnie Sellars (ed). This is a compilation of 50 essays by 50 authors, doctors, celebrities about turning 50 and what you need to know. It was pretty good, a general summary on changes you will face in areas like fitness, attitude, career and friendship. Thing is, most of us at age 50 are already aware of these things! So I guess it’s a good book to read when you are 45. Best part is that all profits are donated. Two stars.

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