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products made from blood donated by a person who later develops CJD, or is found to have risk factors for CJD, must be withdrawn.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.