[Congressional Record Volume 150, Number 53 (Thursday, April 22, 2004)]
[Senate]
[Page S4293]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




       NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK

  Mr. DURBIN. 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. Fortunately, 70 percent of PIDD 
patients are able to maintain their health through regular infusions of 
a plasma product known as intravenuous immunoglobulin, IGIV. IGIV helps 
bolster the immune system and provides critical protection against 
infection and disease.
  I am familiar with primary immune deficiencies because of a family in 
my State, the Jones family, whose daughter, Emma, was born with common 
variable immune deficiency, CVID, and hypogammaglobulinenimea. Emma has 
no immune system and relies on IGIV infusions every month to keep her 
alive. Emma, 9 years old, is a patient at Duke University Medical 
Center, and is hoping to be a candidate for a stem cell transplant. 
Emma's mother, Jill, also has CVID and receives IGIV infusions. The 
Jones family has become active volunteers for the Immune Deficiency 
Foundation, to help other families facing PIDD in my home State of 
Illinois.
  I would also like to tell you about another courageous family in my 
State, the Berryhills, who became foster parents to an infant that was 
finally diagnosed with severe combined immune deficiency, SCID, or 
bubble boy syndrome. Their son, who they want to adopt, would have died 
if Zina and Ray Berryhill did not persist in finding out why he was 
dying before their eyes. Their son was finally diagnosed with SCID, and 
the cure for him is a bone marrow transplant. Unfortunately, they have 
not been able to find a match, due to the shortage of African Americans 
on the Marrow Donor List. Zina Berryhill continues to hold bone marrow 
drives, and keeps her son isolated, except for his frequent trips to 
the hospital for his IGIV infusions. The Berryhill family has also 
become active volunteers for the Immune Deficiency Foundation.
  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 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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