IV
106TH CONGRESS
2D SESSION
H. RES. 537
Expressing the sense of the House of Representatives with respect to the
serious national problems associated with polycystic kidney disease.
IN THE HOUSE OF REPRESENTATIVES
JUNE 27, 2000
Mrs. THURMAN (for herself and Mr. SHAW) submitted the following
resolution; which was referred to the Committee on Commerce
RESOLUTION
Expressing the sense of the House of Representatives with
respect to the serious national problems associated with
polycystic kidney disease.
Whereas polycystic kidney disease (‘‘PKD’’) is the most prev-
alent life-threatening genetic disease in the United
States, affecting more Americans than the combined
number of those in the United States who have cystic fi-
brosis, sickle cell anemia, hemophilia, muscular dys-
trophy, Down’s syndrome, and Huntington’s disease;
Whereas an estimated 600,000 American’s have received ‘‘an
inheritance they don’t want and can’t give back’’ in the
form of a dominant genetic ‘‘bequest’’ called PKD, and
countless additional friends, loved-ones, spouses and care
givers must shoulder the physical, emotional, and finan-
cial burdens it causes;
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Whereas PKD is a severe, monogenetic disease that has a
devastating impact, in both human and economic terms,
on Americans of all ages and equally affects people of all
races, genders, nationalities, geographic locations, and in-
come levels;
Whereas, based on NIH prevalence estimates for PKD in the
United States, approximately 1,400 PKD patients reside
in each of America’s 435 Congressional Districts;
Whereas the vast majority of those who have PKD reach kid-
ney failure and do so at the average age of 53, and since
the largest segment of our population, America’s ‘‘baby
boomers’’ are rapidly reaching that age, PKD may well
cause a colossal strain on dialysis and kidney transplan-
tation resources and on the general delivery of health
care in America;
Whereas PKD is one of the four leading causes of kidney
failure in America, causing approximately 2,000 new
cases of end stage renal disease annually and premature
death for an estimated 1,000 to 1,500 people annually as
the direct result of this horrific malady;
Whereas end stage renal disease is the fastest growing com-
ponent of the Medicare budget each year and PKD con-
tributes to that cost by an estimated $2,000,000,000 an-
nually for dialysis, kidney transplantation, and related
therapies;
Whereas the fear of an unknown future with a life-threat-
ening genetic disease, the apprehension over possible ge-
netic discrimination, the severity of the symptoms which
PKD patients suffer through, and the limited public
awareness of the disease causes many to live in denial
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and thus forego regular visits to their physicians and
overlook good, general health management;
Whereas PKD frequently goes undetected and an estimated
500,000 of the 600,000 Americans who have it don’t
even know it, often resulting in devastating emotional
trauma when a diagnosis is finally made;
Whereas PKD is a systemic disease that causes other major
risk factors to ones health that requires prolonged and
expensive treatment for symptoms such as high blood
pressure, critical kidney infections, frequent episodes of
kidney stones, potentially life-ending aneurysms, poly-
cystic livers, polycystic reproductive organs (ovaries and
testes), polycystic pancreases, abdominal hernias, diver-
ticulitis, and two forms of heart disease;
Whereas many Americans with life-threatening genetic dis-
eases like PKD are at risk for losing their health and life
insurance, losing their jobs and/or their chances for pro-
motion because they have a preexisting chronic, poten-
tially lethal and costly disease;
Whereas those individuals who have chronic, life-threatening
diseases like PKD have a seven times the national aver-
age predisposition toward depression and its resultant
consequences;
Whereas there is currently no method to prevent, treat, or
cure PKD, nor is there any current procedure to control
the progression of it;
Whereas reducing the tremendous health and human burden
of PKD and its enormous economic toll depends on dis-
covering a treatment to stop it in its tracks and ulti-
mately producing a genetic ‘‘preemergent’’ form of gene
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therapy to break the chain of genetic inheritance for fu-
ture generations of Americas’s PKD families;
Whereas improvements in diagnostic technology and the ex-
pansion of scientific knowledge about PKD have led to
the discovery of the two primary genes that cause PKD,
the two primary protein products, and the understanding
of cell structures and signaling pathways that cause cyst
growth are predictive of the development of interventional
therapies in as few as five years given the appropriate
public and private funding of biomedical research;
Whereas the scientific momentum in PKD research has
caused the head of America’s Human Genome Project,
Dr. Francis Collins, to call PKD ‘‘one of the hottest
areas of scientific investigation in all of biochemistry’’;
Whereas after extensive review and deliberations, a panel of
top PKD scientists, sanctioned and convened by the Na-
tional Institutes of Diabetes, Digestive and Kidney Dis-
eases (‘‘NIDDK’’), has found that ‘‘the field is on the
threshold of major advances, but that effective treatment
of the polycystic kidney disorders will require the efforts
of scientists and physicians from nearly all of the dis-
ciplines of renal science, and will require NIDDK to
strongly commit to substantial increases in research
funding now and in the years to come’’;
Whereas NIDDK’s expert PKD Panel has developed the
PKD Strategic Plan in which they have identified a com-
prehensive strategy for PKD research leading to a treat-
ment and cure to be funded by the National Institutes
of Health, and has recommended a base funding level of
$20,000,000 for PKD research at the National Institutes
of Health in fiscal year 2001; and
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Whereas the House of Representatives as an institution and
Members of Congress as individuals who represent Amer-
ica’s 600,000 PKD patients are in unique positions to
help raise public awareness about the need for increased
funding for research leading to a soon treatment and
cure: Now, therefore, be it
Resolved, That it is the sense of the House of Rep-
resentatives that—
(1) 
the 
Federal 
Government 
has 
a
responsibility—
(A) to continue to increase research fund-
ing, as recommended by NIDDK’s expert PKD
Panel in its PKD Strategic Plan, so that the
development of a treatment and cure for PKD
may soon be discovered;
(B) to endeavor to raise awareness about
the importance of early diagnosis, strict blood-
pressure control, and timely treatment of PKD
symptoms;
(C) to continue to consider ways to im-
prove access to, and the quality of, health care,
dialysis, and kidney transplantation or PKD
and other kidney patients; and
(D) to take an active role in increasing
organ donation across the country;
(2) all Americans should take an active role in
reviewing their health condition and noting if they
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may have PKD symptoms such a family history of
kidney disease, frequent kidney and/or urinary tract
infections, frequent episodes of kidney stones, chron-
ic lower-back or flank pain, high blood pressure, and
blood in their urine; and
(3) national and community organizations and
health care providers should endeavor to promote
awareness of PKD and its complications and should
encourage early detection of PKD through regular
screenings, education, and by providing information,
support, and access to services.
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