III 109th CONGRESS 2d Session S. RES. 546 IN THE SENATE OF THE UNITED STATES August 2, 2006 Mr. DeWine submitted the following resolution; which was referred to the Committee on Health, Education, Labor, and Pensions RESOLUTION Supporting the goals and ideals of a 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) is the most prevalent life-threatening genetic disease in the United States, is a severe, dominantly inherited disease that has a devastating impact, in both human and economic terms, on people of all ages, and affects equally people of all races, sexes, nationalities, geographic locations, and income levels; Whereas, based on prevalence estimates by the National Institutes of Health, it is estimated that about 600,000 patients in the United States have a genetic inheritance from 1 or both parents called polycystic kidney disease, and that countless additional friends, loved ones, spouses, and caregivers must shoulder the physical, emotional, and financial burdens that polycystic kidney disease causes; Whereas polycystic kidney disease, for which there is no cure, is 1 of the 4 leading causes of kidney failure in the United States; 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; 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 causes 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 (7 times the national average) and its resultant consequences 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 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 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 the national PKD Foundation and its 60 volunteer chapters around the country 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 the PKD Foundation’s Walk for PKD has grown from a small, grassroots activity to an annual national awareness event held during the third week of September, and such week would be an appropriate time to recognize National Polycystic Kidney Disease Week: Now, therefore, be it

That the Senate— (1)supports the goals and ideals of a National Polycystic Kidney Disease Awareness Week to raise public awareness and understanding of polycystic kidney disease (known as PKD); (2)recognizes the need for additional research into a cure for polycystic kidney disease; and (3)encourages the people of the United States and interested groups to support National Polycystic Kidney Awareness Week through appropriate ceremonies and activities to promote public awareness of polycystic kidney disease and to foster understanding of the impact of the disease on patients and their families.