[Congressional Record (Bound Edition), Volume 155 (2009), Part 15]
[Senate]
[Pages 20799-20801]
[From the U.S. Government Publishing Office, www.gpo.gov]




                         SUBMITTED RESOLUTIONS

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 SENATE RESOLUTION 241--DESIGNATING THE PERIOD BEGINNING ON SEPTEMBER 
 13, 2009, AND ENDING ON SEPTEMBER 19, 2009, AS ``NATIONAL POLYCYSTIC 
KIDNEY DISEASE AWARENESS WEEK'', AND SUPPORTING THE GOALS AND IDEALS OF 
  A NATIONAL POLYCYSTIC KIDNEY DISEASE AWARENESS WEEK TO RAISE PUBLIC 
AWARENESS AND UNDERSTANDING OF POLYCYSTIC KIDNEY DISEASE AND THE IMPACT 
  POLYCYSTIC KIDNEY DISEASE HAS ON PATIENTS AND FUTURE GENERATIONS OF 
                             THEIR FAMILIES

  Mr. KOHL (for himself and Mr. Hatch) submitted the following 
resolution; which was referred to the Committee on the Judiciary:

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                              S. Res. 241

       Whereas polycystic kidney disease, known as ``PKD'', is 1 
     of the most prevalent life-threatening genetic diseases in 
     the United States;
       Whereas polycystic kidney disease is a severe, dominantly 
     inherited disease that has a devastating impact, in both 
     human and economic terms, affecting equally people of all 
     ages, races, sexes, nationalities, geographic locations, and 
     income levels;
       Whereas there are 2 hereditary forms of polycystic kidney 
     disease, with autosomal dominant polycystic kidney disease 
     (ADPKD) affecting 1 in 500 people worldwide, including 
     600,000 patients with polycystic kidney disease in the United 
     States, according to prevalence estimates by the National 
     Institutes of Health;
       Whereas in families in which 1 or both parents have ADPKD 
     there is a 50-percent chance that the parents will pass the 
     disease to their children;
       Whereas autosomal recessive polycystic kidney disease 
     (ARPKD), a rarer form of PKD, affects 1 in 20,000 live births 
     and frequently leads to early death;
       Whereas in families in which both parents carry ARPKD there 
     is a 25-percent chance that the parents will pass the disease 
     to their children;
       Whereas, in addition to patients directly affected by 
     polycystic kidney disease, countless additional friends, 
     loved ones, family members, colleagues, and caregivers must 
     shoulder the physical, emotional, and financial burdens of 
     polycystic kidney disease;
       Whereas polycystic kidney disease, for which there is no 
     treatment or cure, is the leading cause of kidney failure 
     resulting from a genetic disease, and 1 of the 4 leading 
     causes of kidney failure in the United States;
       Whereas the vast majority of patients with polycystic 
     kidney disease have kidney failure at the age of 53, on 
     average, 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 the cost with an estimated 
     $2,000,000,000 budgeted annually for dialysis, kidney 
     transplantation, and related therapies;
       Whereas polycystic kidney disease is a systemic disease 
     that causes damage to the kidneys and the cardiovascular, 
     endocrine, hepatic, and gastrointestinal systems;
       Whereas polycystic kidney disease 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 fail to recognize the presence of the 
     disease, to forego regular visits to physicians, and not to 
     receive good health or therapeutic management that would help 
     avoid more severe complications when kidney failure occurs;
       Whereas people suffering from chronic, life-threatening 
     diseases, such as polycystic kidney disease, are more 
     frequently predisposed to depression and the resulting 
     consequences of depression because of anxiety over the 
     possible pain, suffering, and premature death that people 
     with polycystic kidney disease may face;
       Whereas the Senate and taxpayers of the United States want 
     treatments and cures for disease and hope to see results from 
     investments in research conducted by the National Institutes 
     of Health and from initiatives such as the National 
     Institutes of Health Roadmap to the Future;
       Whereas polycystic kidney disease is an example of how 
     collaboration, technological innovation, scientific momentum, 
     and public-private partnerships can--
       (1) generate therapeutic interventions that directly 
     benefit the people suffering from polycystic kidney disease;
       (2) save billions of Federal dollars under Medicare, 
     Medicaid, and other programs for dialysis, kidney 
     transplants, immunosuppressant drugs, and related therapies; 
     and
       (3) allow 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 
     dedicated to expanding essential research, fostering public 
     awareness and understanding, educating patients and their 
     families about polycystic kidney disease to improve treatment 
     and care, providing appropriate moral support, and 
     encouraging people to become organ donors; and
       Whereas volunteers engage in an annual national awareness 
     event held during the third week of September, making that 
     week an appropriate time to recognize National Polycystic 
     Kidney Disease Awareness Week: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates the period beginning on September 13, 2009, 
     and ending on September 19, 2009, 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--
       (A) to support National Polycystic Kidney Disease Awareness 
     Week through appropriate ceremonies and activities;
       (B) to promote public awareness of polycystic kidney 
     disease; and
       (C) to foster understanding of the impact of the disease on 
     patients and their families.

  Mr. KOHL. Mr. President, I rise today along with Senator Hatch to 
submit a resolution to increase awareness of Polycystic Kidney Disease, 
PKD, a common and life threatening genetic illness.
  Over 600,000 people have been diagnosed with PKD nationwide. There is 
no treatment or cure for this devastating disease. Families and friends 
struggle to fight PKD and provide unwavering support to their suffering 
loved ones.
  But there is hope. The PKD Foundation has led the fight for increased 
research and patient education. Recent studies have led to the 
discovery of the genes that cause PKD as well as promising clinical 
drug trials for treatment. More needs to be done, however, and the 
Government wants to help.
  In order to increase public awareness of this fatal disease, I 
propose that September 13th through the 19th be designated as National 
Polycystic Kidney Disease Awareness Week. This week coincides with the 
annual walk for PKD which takes place every September. In Wisconsin, 
where over 10,000 patients are living with the disease, residents 
gather across the State to take part in this very special walk.
  Increasing awareness will help all those affected by Polycystic 
Kidney Disease, and I hope my colleagues will support this important 
resolution.
  Mr. HATCH. Mr. President, I am pleased to submit, along with my 
colleague, Senator Herb Kohl, a resolution to designate the week of 
September 13-19, 2009 as National Polycystic Kidney Disease Awareness 
Week.
  Polycystic kidney disease, or PKD, is a life-threatening, genetic 
disease of which most Americans are probably unaware. According to the 
PKD Foundation, PKD affects 600,000 Americans and 12.5 million children 
and adults worldwide. There is no treatment or cure, but it is our hope 
that, with this resolution, a National PKD Awareness Week will promote 
public awareness and education of this devastating disease.
  PKD is one of the four leading causes of kidney failure, which also 
called end-stage renal disease, ESRD, PKD is characterized by the 
growth of numerous fluid-filled cysts in the kidney, which slowly 
reduce the kidney function and can eventually lead to kidney failure. 
Some cysts in individuals with PKD have reportedly grown to the size of 
a football. When PKD causes kidneys to fail, the patient requires 
dialysis or kidney transplantation. About one-half of people with the 
major type of PKD progress to kidney failure.
  PKD is of particular interest to me because so many Utahns suffer 
from this disease. The PKD Foundation claims that approximately 5,000 
individuals in Utah live with PKD, and that the incidence of end-stage 
renal disease in Utah is three times that of the national average. To 
cure PKD could result in billions of dollars in savings to the 
military, Medicare, Medicaid and the Veterans Administration for 
dialysis, transplantation and related treatments.
  To promote greater understanding of this destructive genetic disease, 
Senator Kohl and I have introduced this resolution to designate a 
National Polycystic Kidney Disease Awareness Week, and I urge our 
colleagues to support it.

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