[Congressional Record Volume 150, Number 55 (Tuesday, April 27, 2004)]
[Senate]
[Pages S4427-S4428]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         ADDITIONAL STATEMENTS

                                 ______
                                 

       NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK

 Ms. MIKULSKI. Mr. President, I rise today in support of 
National Primary Immune Deficiency Diseases Awareness Week. The 
national awareness week took place the week of April 19th. 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, 7 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.
  The Immune Deficiency Foundation, which is the Nation's leading 
organization dedicated to improving the quality of life for PIDD 
patients is located in Towson, MD. The foundation was founded in 1980 
by parents of primary immune deficient children and their physicians. 
At that time, there were few treatments for many primary immune 
deficiency diseases, and the treatments that were available were 
painful and not very effective. There were no educational materials for 
patients, no public advocacy initiatives, and little research was being 
done. Over the past 24 years, the foundation has made tremendous 
strides.
  Recently, the foundation entered into a 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. 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 nine and a half years. In the interim, those afflicted may 
suffer repeated and serious infections and possibly irreversible damage 
to internal organs. That it why it is critical that we raise awareness 
about these illnesses within the general public and the health care 
community.
  I commend the Immune Deficiency Foundation for its leadership in this 
area and I am proud that I was able to join them in recognizing the 
week of April 19 as National Primary Immune Deficiency Diseases 
Awareness Week. I encourage my colleagues to help improve the quality 
of life for PIDD patients and their families.

[[Page S4428]]



                          ____________________