Fall 1999 - Factor Nine News

FACTOR NINE NEWS

From The Coalition for Hemophilia B

Fall 1999

 

Update

 

Over the past few years we have noticed an increase in readers from the Hemophilia A population.   Our newsletter does tend to lean more toward scientific research and we are pleased with the interest from the Hemophilia A community.  All research done on factor IX will also be able to help with factor VIII studies.  The reason scientist like to work with the IX molecule (protein) is because it is smaller and less fragile than the VIII molecule, thus making it easier to study. We have also had many requests for information pertaining to Hepatitis C and HIV.  One question in particular is: is the more purified product better to use for people who also have Hepatitis C and HIV.  This is an interesting question but so far there have been no conclusive studies that state the more purified  is better.   If you speak with someone with hemophilia, HIV and Hepatitis C they will tell you from their point of view that the more purified is better because it is less taxing on the body.  Scientists say the body normally breaks down the proteins anyway so the process is natural.  We know that the more purified factor is indeed better for  overall use because of the purification processes, but when asking the question specifically;  is it better for those with HIV and Hepatitis C the studies indicate no overall difference.  We will research further into this question and present our  findings in our next issue.

 

In order to better serve you, we are in the process of planning trips throughout the United States.  We would like to meet with families and have an informal sit down to discuss whatever questions or concerns you may have, that we have not addressed in our newsletter. If you have an interest in meeting with us  please contact Kim Phelan (contact information listed at the end of the newsletter). 

 

A survey is being designed by us and will be mailed to you shortly.  Your participation in the survey is greatly appreciated and it helps us to serve you better.  Analysis of your surveys show us patterns and issues which need to addressed.

 

Mononine availability

 

Centeon has vials of 1000 IU of Mononine currently in inventory which they anticipate receiving regular product release.  If you have any questions please call Russ Reid at (610) 878-4304.

 

Centeon -  fda inspection

 

On Wednesday, September 8, 1999, FDA inspectors completed their inspection of the Kankakee, Illinois facility.  The primary objective for this inspection was to gain FDA approval for the release of newly manufactured Albuminar,  However, the FDA did not limit its review to this area, conducting instead a more general cGMP inspection of their operations.

 

According to the Chicago District Office and the Washington, DC office of the FDA, none of the observations are serious.  As is normal practice, Centeon is in the process of responding to the FDA’s observations.

 

Centeon will not receive the final responses from the Washington office of the FDA (including the ability to distribute newly manufactured Albuminar) until late in October.

 

Additional information will be supplied after the final report from the office of the FDA is completed.

 

 

 

Genetics Institute awards scholarships to outstanding students with hemophilia A and B through its third annual scholarship program

 

Genetics Institute - a unit of Wyeth-Ayerst, the Pharmaceutical Division of American Home Products Corporation (NYSE:AHP) has announced winners of its 1999-2000 scholarship program, sharing a brighter tomorrow.  This year’s program was expanded to include a category for students with hemophilia A as well as for students with hemophilia B.  Winners of the hemophilia B college and vocations scholarships are:

 

College Scholarship Winners

Cade F. Pleggenkuhle

David Pruess

Travis Kyle Roop

Zachary Dwain Carson

 

Vocational Scholarship Winners

Jason William Poppe

David LeBaron Jones

Justin Keith Kaelii Irvine

 

Winners of the hemophilia A college and vocations scholarships are:

 

College Scholarship Winners

Dustin Lamm Schubert

Christopher James Schubert

Jeffrey Mark Jantz

Samuel Leland Fieider

Aaron D. Anderson

 

Vocational Scholarship Winners

Jeremy John Stano

Scott Gene Armstrong

 

Genetics Institute - New Offices

 

Genetics Institute-Wyeth has moved its main offices to:  555 Lancaster Avenue, St. David’s, PA  19087.

 

Neal Fitzpatrick

Hemophilia Group Director

 

Ryan Daufenbach

Hemophilia Product Manager

 

Deborah Gurwitz

Associate Product Manager - Hemophilia

 

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WE LOOK FORWARD TO SEEING YOU AT THE NHF CONFERENCE IN DALLAS NOV 4-6!!