[Congressional Record Volume 150, Number 52 (Wednesday, April 21, 2004)]
[Senate]
[Pages S4221-S4222]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




       NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK

  Mrs. MURRAY. Mr. President, 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, 
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.

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  Fortunately, 70 percent of PIDD patients are able to maintain their 
health through regular infusions of a plasma product known as 
intravenous immunoglobulin, IGIV. IGIV helps bolster the immune system 
and provides critical protection against infection and disease.
  I want to share with my colleagues the story of one family in 
Washington State affected by PIDD, the Trump family, who have common 
variable immune deficiency, CVID, one of the more common forms of 
primary immune deficiency diseases. Gary Trump's first wife, Tracee, 
carried CVID for at least 18 years prior to diagnosis. During that 
time, she suffered repetitive infections, even life-threatening 
disease, but was never properly diagnosed. In 1993, 8 days after the 
birth of their second son, Christian, Tracee was struck down by viral 
encephalitis, and suffered through 4 years of pain, amnesia, and total 
disability prior to passing away in 1997. Their first son, Darren, also 
had numerous infections, almost from birth. Within a year of Tracee's 
diagnosis, Darren was tested and found to have CVID. Christian, who 
nearly died of viral pneumonia at 2 months of age, was also diagnosed 
with CVID.
  The Trump family is not unique with the difficulty and delay in 
diagnosis of primary immune deficiency disease. 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.
  I am proud to have the opportunity to recognize 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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