[Congressional Record Volume 140, Number 39 (Wednesday, April 13, 1994)]
[Senate]
[Page S]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: April 13, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
                PRIMARY IMMUNE DEFICIENCY AWARENESS WEEK

  Mr. LIEBERMAN. Mr. President, last month the Senate passed Senate 
Joint Resolution 151 declaring the week beginning April 10, 1994, as 
National Primary Immune Deficiency Awareness Week. I am pleased that so 
many of my colleagues, including the majority and minority leaders, 
joined me in supporting the resolution. Primary immune deficiency is a 
genetic defect to the immune system that presently affects 1 in 500 
persons, most of them children, in the United States. This condition 
often provokes a lifetime of serious illness and sometimes results in 
death, yet many doctors and families know little about the disease. 
Primary immune deficiency is frequently misdiagnosed and not properly 
treated. Therapy and medicines which can significantly improve the 
health of those suffering from primary immune deficiency, protect their 
vital organs, and save their lives do exist, but many families and 
patients suffer alone with little medical or psychological support.
  The Modell family from Connecticut has suffered through the tragedy 
of losing a loved one to primary immune deficiency. Jeffrey Modell 
struggled bravely with this disease until it took his life at the age 
of 15. His parents Fred and Vicky Modell experienced the enormous 
medical, emotional, and financial difficulties of dealing with the 
primary immune deficiency on their own. After Jeffrey's death, they 
realized the need for an organization which would provide families who 
are struggling to overcome primary immune deficiency with a place to 
turn for help. They founded the Jeffrey Modell Foundation, a national, 
nonprofit research foundation which operates a 24-hour information and 
referral hotline and helps fund and coordinate the struggle against 
primary immune deficiency through work in three areas: Research, 
physician and patient education; and patient support.
  The Modell Foundation has made extraordinary progress in realizing 
all three goals, but we must expand our efforts to increase public 
awareness--500,000 Americans are known to be affected by this disease. 
We need to ensure that parents and health care professionals are aware 
of the symptoms of primary immune deficiency, that they know where to 
turn for assistance, and that we are supporting research efforts to 
increase the medical community's understanding of this condition.
  I thank my colleagues for supporting the resolution I introduced last 
year declaring this week National Primary Immune Deficiency Awareness 
Week.
  Mr. President, I ask unanimous consent that the text of the joint 
resolution be printed in the Record immediately following my remarks.
  There being no objection, the joint resolution was ordered to be 
printed in the Record, as follows:

                             S.J. Res. 151

       Whereas primary immune deficiency is a congenital defect in 
     the immune system such that the body cannot adequately defend 
     itself from infection;
       Whereas primary immune deficiency is most often diagnosed 
     in children and affects more children than leukemia and 
     lymphoma combined;
       Whereas primary immune deficiency is believed to effect 
     500,000 Americans and possibly more because the defect is 
     often undiagnosed and misdiagnosed;
       Whereas many forms of primary immune deficiency are 
     inherited;
       Whereas there are currently considered to be 70 forms of 
     primary immune deficiency ranging from severe combined immune 
     deficiency (which is fatal if untreated) to chronic recurring 
     infections and allergies that cannot be managed with 
     prophylactic antibiotics;
       Whereas the earliest symptoms of primary immune deficiency 
     are easily confused with a number of common illnesses or 
     infections so that physicians often fail to diagnose and 
     treat the underlying problem;
       Whereas once suspected, primary immune deficiency can be 
     diagnosed through a series of blood screenings that test 
     immune function;
       Whereas early intervention and treatment can save lives and 
     prevent permanent damage to lungs and other organs;
       Whereas many forms of treatment are available once a 
     specific diagnosis is made;
       Whereas procedures such as bone marrow transplants may 
     result in complete cure, and other treatments like monthly 
     infusions of gamma globulin dramatically reduce a patient's 
     risk of infections and enable the patient to lead a normal 
     life;
       Whereas patients may have long periods of normal health 
     then suddenly be struck by severe fevers and infections;
       Whereas lack of public awareness can lead to anxiety and 
     leave families isolated and confused; and
       Whereas education is essential to make the general public, 
     health care professionals, employers, and insurers more 
     knowledgeable about primary immune deficiency: Now, 
     therefore, be it
       Resolved by the Senate and House of Representatives of the 
     United States of America in Congress assembled, That the week 
     of April 10 through 16, 1994, is designated as ``Primary 
     Immune Deficiency Awareness Week''. The President is 
     authorized and requested to issue a proclamation calling upon 
     the people of the United States to observe the week with 
     appropriate programs, ceremonies, and activities.

  Mr. LIEBERMAN. Mr. President, I yield the floor and suggest the 
absence of a quorum.
  The ACTING PRESIDENT pro tempore. The clerk will call the roll.
  The assistant legislative clerk proceeded to call the roll.
  Mr. NICKLES. Mr. President, I ask unanimous consent that the order 
for the quorum call be rescinded.
  The ACTING PRESIDENT pro tempore. Without objection, it is so 
ordered.

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