[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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