[Congressional Record (Bound Edition), Volume 150 (2004), Part 6]
[Extensions of Remarks]
[Page 7267]
[From the U.S. Government Publishing Office, www.gpo.gov]




          RECOGNIZING NATIONAL PRIMARY IMMUNE DEFICIENCY WEEK

                                 ______
                                 

                          HON. DAVID E. PRICE

                           of north carolina

                    in the house of representatives

                       Wednesday, April 21, 2004

  Mr. PRICE of North Carolina. Mr. Speaker, I rise today to ask my 
colleagues to join me in recognizing the week of April 19th as National 
Primary Immune Deficiency Diseases Awareness Week. Primary immune 
deficiency diseases (PIDD) are genetic disorders in which part of the 
body's immune system is missing or does not function properly. The 
World Health Organization recognizes more than 150 primary immune 
diseases which affect as many as 50,000 people in the United States. 
Fortunately, 70 percent of PIDD patients are able to maintain their 
health through regular infusions of a plasma product known as 
intravenous immunoglobulin. IGIV helps bolster the immune system and 
provides critical protection against infection and disease.
  I am familiar with primary immune deficiencies because of the work 
that is being done in my district by Dr. Rebecca Hatcher Buckley. Dr. 
Buckley is Chief of Pediatric Allergy and Immunology at Duke University 
Medical Center, and she is the leading expert and pioneer in the 
diagnosis and treatment of Severe Combined Immune Deficiency (SCID) 
also known as ``bubble boy syndrome.'' Children diagnosed with SCID 
lack an immune system, which is essential to survival. Dr. Buckley has 
dedicated her life to helping to save the lives of babies born with 
SCID through early diagnosis and treatment.
  Although newborn screening exists for SCID, states do not include the 
test among their required screenings. Additionally, despite the recent 
progress in PIDD research, the average length of time between the onset 
of symptoms in a patient and a definitive diagnosis of PIDD is over 9 
years. In the interim, those afflicted may suffer repeated and serious 
infections and possibly irreversible damage to internal organs. That is 
why it is critical that we raise awareness about these illnesses within 
the general public and the health care community.
  Mr. Speaker, I commend the Immune Deficiency Foundation for its 
leadership in this area, and I am proud to join them in recognizing the 
week of April 19th as National Primary Immune Deficiency Diseases 
Awareness Week. I encourage my colleagues to work with us to help 
improve the quality of life for PIDD patients and their families.

                          ____________________