[Congressional Record Volume 150, Number 52 (Wednesday, April 21, 2004)]
[Extensions of Remarks]
[Page E594]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


[[Page E594]]
 RECOGNITION OF NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS 
                                  WEEK

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                            HON. JIM McCRERY

                              of louisiana

                    in the house of representatives

                       Wednesday, April 21, 2004

  Mr. McCRERY. 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 
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 
P.I.D.D. patients are able to maintain their health through regular 
infusions of a plasma product know as intravenuous immunoglobulin. IVIG 
helps bolster the immune system and provides critical protection 
against infection and disease.
  I am familiar with primary immune deficiencies because one of my good 
friends and constituents, Gail Nelson, is a P.I.D.D. patient. Gail and 
her husband Syd Nelson are tireless advocates for the primary immune 
deficiency community as volunteers for the Immune Deficiency 
Foundation. IDF is the nation's leading organization dedicated to 
improving the quality of life for P.I.D.D. patients.
  Several years ago, the Nelsons educated me about the IVIG treatments 
that Gail and other P.I.D.D. patients receive on a monthly basis. 
Thanks to Gail and Syd's advocacy, I learned that the optimal setting 
for many P.I.D.D. patients to receive their IVIG infusions is in the 
home. Not only is home infusion more convenient for patients, it 
eliminates the potential for individuals to be exposed to infectious 
agents in a doctor's office or hospital outpatient setting. Despite the 
clear benefits of home infusion, I was disappointed to learn that 
Medicare would only pay for the administration of IVIG in an outpatient 
setting or a doctor's office.
  As Congress undertook its landmark effort last year to modernize the 
Medicare program, I was pleased to work with my colleagues on the Ways 
and Means Committee to include a provision in the legislation to extend 
coverage for the home infusion of IVIG. This important provision 
provides coverage for home infusions if the Medicare beneficiary is (1) 
a diagnosed primary immune deficiency patient, and (2) has received 
clearance from his/her physician to receive treatment in the home. This 
important provision makes a new treatment option available for Medicare 
patients that has been the standard of care for many P.I.D.D. patients 
on private insurance.
  Mr. Speaker, despite the important progress we have made in treating 
primary immune deficiencies, the average length of time between the 
onset of symptoms and a definitive diagnosis of P.I.D.D. 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 on behalf of the P.I.D.D. community, 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 P.I.D.D. patients and 
their families.

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