III 

110TH CONGRESS 

2D SESSION S. RES. 620 

Designating the week of September 14–20, 2008, as National Polycystic 

Kidney Disease Awareness Week, to raise public awareness and understanding of polycystic kidney disease, and to foster understanding of 

the impact polycystic kidney disease has on patients and future generations of their families. 

IN THE SENATE OF THE UNITED STATES 

JULY 23, 2008 

Mr. KOHL (for himself and Mr. HATCH) submitted the following resolution; 

which was referred to the Committee on the Judiciary 

JULY 31, 2008 

Reported by Mr. LEAHY, without amendment 

SEPTEMBER 8, 2008 

Considered and agreed to 

RESOLUTION 

Designating the week of September 14–20, 2008, as National 

Polycystic Kidney Disease Awareness Week, to raise public awareness and understanding of polycystic kidney disease, and to foster understanding of the impact polycystic kidney disease has on patients and future generations of their families. 

Whereas polycystic kidney disease (known as ‘‘PKD’’), one of 

the most prevalent life-threatening genetic diseases in the 

United States, is a severe, dominantly inherited disease 

that has a devastating impact, in both human and ecomstockstill on PROD1PC66 with BILLS

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SRES 620 ATS 

nomic terms, on people of all ages, and affects equally 

people of all races, sexes, nationalities, geographic locations, and income levels; 

Whereas this devastating disease comes in 2 hereditary 

forms, with autosomal dominant polycystic kidney disease 

(ADPKD) affecting 1 in 500 worldwide, including 

600,000 PKD patients in the United States, according to 

prevalence estimates by the National Institutes of Health; 

Whereas families in which 1 or both parents have ADPKD 

have a 50 percent chance of passing the disease on to 

each of their children; 

Whereas autosomal recessive polycystic kidney disease 

(ARPKD), a rarer form of PKD, affects 1 in 20,000 live 

births and too often leads to death early in life; 

Whereas parents who carry the gene for ARPKD pass on the 

disease to 25 percent of the children the parents conceive; 

Whereas, in addition to patients directly affected by PKD, 

countless friends, loved ones, family members, colleagues, 

and caregivers must shoulder the physical, emotional, and 

financial burdens that polycystic kidney disease causes; 

Whereas polycystic kidney disease, for which there is no 

treatment or cure, is the leading genetic cause of kidney 

failure in the United States and the fourth leading cause 

overall; 

Whereas the vast majority of polycystic kidney disease patients reach kidney failure at an average age of 53, causing a severe strain on dialysis and kidney transplantation 

resources and on the delivery of health care in the United 

States, as the largest segment of the population of the 

United States, the ‘‘baby boomers’’, continues to age; 

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Whereas end stage renal disease is one of the fastest growing 

components of the Medicare budget, and polycystic kidney disease contributes to that cost by an estimated 

$2,000,000,000 annually for dialysis, kidney transplantation, and related therapies; 

Whereas polycystic kidney disease is a systemic disease that 

causes damage to the kidney and the cardiovascular, endocrine, hepatic, and gastrointestinal organ systems and 

instills in patients a fear of an unknown future with a 

life-threatening genetic disease and apprehension over 

possible genetic discrimination; 

Whereas the severity of the symptoms of polycystic kidney 

disease and the limited public awareness of the disease 

cause many patients to live in denial and forego regular 

visits to their physicians or to avoid following good health 

management which would help avoid more severe complications when kidney failure occurs; 

Whereas people who have chronic, life-threatening diseases 

like polycystic kidney disease have a predisposition to depression and the resulting consequences of depression due 

to their anxiety over pain, suffering, and premature 

death; 

Whereas the Senate and taxpayers of the United States desire to see treatments and cures for disease and would 

like to see results from investments in research conducted 

by the National Institutes of Health (NIH) and from 

such initiatives as the NIH Roadmap to the Future; 

Whereas polycystic kidney disease is a verifiable example of 

how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate 

therapeutic interventions that directly benefit polycystic 

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kidney disease sufferers, save billions of Federal dollars 

under Medicare, Medicaid, and other programs for dialysis, kidney transplants, immunosuppressant drugs, and 

related therapies, and make available several thousand 

openings on the kidney transplant waiting list; 

Whereas improvements in diagnostic technology and the expansion of scientific knowledge about polycystic kidney 

disease have led to the discovery of the 3 primary genes 

that cause polycystic kidney disease and the 3 primary 

protein products of the genes and to the understanding 

of cell structures and signaling pathways that cause cyst 

growth that has produced multiple polycystic kidney disease clinical drug trials; 

Whereas there are thousands of volunteers nationwide who 

are dedicated to expanding essential research, fostering 

public awareness and understanding of polycystic kidney 

disease, educating polycystic kidney disease patients and 

their families about the disease to improve their treatment and care, providing appropriate moral support, and 

encouraging people to become organ donors; and 

Whereas these volunteers engage in an annual national 

awareness event held during the third week of September, 

and such a week would be an appropriate time to recognize National Polycystic Kidney Disease Awareness 

Week: Now, therefore, be it 

1 Resolved, That the Senate— 

2 (1) designates the week of September 14–20, 

3 2008, as ‘‘National Polycystic Kidney Disease 

4 Awareness Week’’; 

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1 (2) supports the goals and ideals of a national 

2 week to raise public awareness and understanding of 

3 polycystic kidney disease; 

4 (3) recognizes the need for additional research 

5 into a cure for polycystic kidney disease; and 

6 (4) encourages the people of the United States 

7 and interested groups to support National Polycystic 

8 Kidney Disease Awareness Week through appro9 priate ceremonies and activities, to promote public 

10 awareness of polycystic kidney disease, and to foster 

11 understanding of the impact of the disease on pa12 tients and their families. 

Æ 

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