[Congressional Record Volume 154, Number 141 (Monday, September 8, 2008)]
[Senate]
[Page S8142]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




           NATIONAL POLYCYSTIC KIDNEY DISEASE AWARENESS WEEK

  The resolution (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, was agreed to.
  The preamble was agreed to.
  The resolution, with its preamble, reads as follows:

                              S. Res. 620

       Whereas polycystic kidney disease (known as ``PICD''), 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 economic 
     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 in 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;
       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 
     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
       Resolved, That the Senate--
       (1) designates the week of September 14-20, 2008, as 
     ``National Polycystic Kidney Disease Awareness Week'';
       (2) supports the goals and ideals of a national week to 
     raise public awareness and understanding of polycystic kidney 
     disease;
       (3) recognizes the need for additional research into a cure 
     for polycystic kidney disease; and
       (4) encourages the people of the United States and 
     interested groups to support National Polycystic Kidney 
     Disease 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.

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