[Congressional Record (Bound Edition), Volume 150 (2004), Part 6]
[Extensions of Remarks]
[Pages 7103-7104]
[From the U.S. Government Publishing Office, www.gpo.gov]




IN RECOGNITION OF NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS 
                                  WEEK

                                 ______
                                 

                            HON. KEVIN BRADY

                                of texas

                    in the house of representatives

                        Tuesday, April 20, 2004

  Mr. BRADY of Texas. Mr. Speaker, I rise today to ask my colleagues to 
join me in recognizing the week of April 19 as National Primary Immune 
Deficiency Diseases Awareness Week. Primary immune deficiency diseases 
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 intravenuous immunoglobulin. IGIV helps 
bolster the immune system and provides critical protection against 
infection and disease.
  I am familiar with primary immune deficiencies because one of my 
constituents, Carol Ann Demaret, is the mother of a child born with 
severe combined immunodeficiency. Her son David struggled with this 
terrible disease his entire life before passing away at the age of 12. 
Because the disease left David without a functioning immune system he 
became known as the ``bubble boy'' due to his confinement in an 
insulating bubble that protected him from infection.
  Since David's death, Carol Ann has become a tireless advocate for the 
primary immune deficiency community. She has testified before Congress 
in support of increased federal funding for biomedical research focused 
on these devastating diseases. Carol Ann is also a longstanding member 
of the Board of Trustees of the Immune Deficiency Foundation, which is 
the nation's leading organization dedicated to improving the quality of 
life for PIDD patients. Recently, the Foundation entered into an 
historic research partnership with the National Institute of Allergy 
and Infectious Diseases at the National Institutes of Health. The 
establishment of the ``US Immunodeficiency Network'' represents the 
most significant advancement in primary immune deficiency research in 
our nation's history. I was pleased to work with the Carol Ann, the 
Foundation, and my colleagues in the House to make this research 
consortium a reality.
  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 9.2 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 19 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.

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