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CDC and Creutzfeldt-Jakob Disease and Blood

DebbieOney DebbieOney at aol.com
Thu May 14 13:23:16 EST 1998

Since noone is posting I thought I'd post this which you will hopefully find

 The Centers for Disease Control and Prevention (CDC) Creutzfeldt-Jakob
     Disease Program

     A Congressional Mandate

     In response to concerns that CJD may be transmitted through blood or
     blood products, the U.S. Congress requested that the
     CDC conduct a study to assess whether CJD is a threat to the safety of
     the nation's blood supply. Researchers believe that
     the risk of transmission to humans through blood products is very
     small since there have been no known cases of CJD
     contracted by humans in this manner. However, precautions are being
     taken to assure that the blood supply is safe from this
     infectious agent. Current blood safety policy requires that any blood
     products made from blood donated by a person who
     later develops CJD, or is found to have risk factors for CJD, must be
     withdrawn. Until the question of transmissibility is
     resolved, the availability and the price of blood products will
     continue to be adversely impacted by shortages caused by
     recalls and the destruction of blood products which, to date, has cost
     over $100 million.

     The Program: How You Can Help

     Because the signs and symptoms of CJD may not develop for up to 30
     years, a person could be infected and not show any
     symptoms during his or her lifetime. Furthermore, there is no
     screening test available for CJD and the only sure way to test
     for CJD is by analyzing brain tissue after death. The CJD program asks
     families of individuals who have received blood
     products to donate brain tissue after their death. The brain tissue
     will be shipped to Stephen J. Armond, M.D., Ph.D.,
     Professor of Neuropathology, University of California, San Francisco
     to test for evidence of CJD. Other brain tissue will be
     stored at CDC in Atlanta for analysis in the future when more is known
     about the cause of CJD.

     Participation in the CJD program is voluntary. The CDC is aware that
     the death of a family member is a difficult time to make
     important decisions. Therefore, the CDC is working through your
     regional coordinator, physician, and treatment center staff to
     provide support to you and your family as you discuss brain tissue
     donation. To help with making an informed and rational
     decision, the CDC has developed information packets which answer
     commonly asked questions about the program including:
     how to authorize the donation; how confidentiality will be assured;
     the ability to retrieve the brain tissue without disfigurement
     and without affecting funeral arrangements; and the time frame for
     receiving test results.

     Why Should I Participate?

     Participation in this project is the only current way to help
     determine whether CJD can be or has been transmitted by blood
     products. If results show that CJD is not transmitted through blood
     products, needless recalls and shortages could be
     avoided. On the other hand, if this study shows that CJD may be spread
     through blood, research could then focus on the
     development of screening tests in an effort to maintain a safe blood
     supply. This project is the response of Congress and the
     CDC to avoid a potential threat to the current members of our
     community who use blood products and future generations
     who will rely on a safe blood supply.

     If you would like more information or would like to participate in the
     CJD program, please contact Tami Wood-Lively,
     HFM's Regional Coordinator, in Michigan at (800)482-3041, ext.29 or if
     you are outside Michigan, at (734)761-2535,

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