[Congressional Record Volume 154, Number 121 (Wednesday, July 23, 2008)]
[Senate]
[Pages S7177-S7179]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         SUBMITTED RESOLUTIONS

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 SENATE RESOLUTION 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

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

[[Page S7178]]

                              S. Res. 620

       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 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 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;
       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.

  Mr. KOHL. Mr. President, I rise today along with Senator Hatch to 
introduce 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 14th through the 20th 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 rise today to join my colleague from 
Wisconsin, Senator Herb Kohl, in introducing a resolution to designate 
September 14-20, 2008, as National Polycystic Kidney Disease Awareness 
Week. Approximately 600,000 Americans and more than 12 million people 
worldwide suffer from polycystic kidney disease or PKD. Through this 
resolution, we hope to raise awareness of this disease that is 
relatively unknown but affects so many people.
  PKD is one of the most common life-threatening genetic diseases 
impacting America today. According to the PKD Foundation, the disease 
afflicts more people than Down syndrome, cystic fibrosis, muscular 
dystrophy and sickle cell anemia combined.
  The two major forms of PKD are autosomal dominant PKD--also called 
``adult PKD'' because it customarily causes symptoms in adulthood--and 
autosomal recessive PKD, a rare form that usually causes symptoms in 
infancy and early childhood. Babies born with this latter type of PKD 
often do not live longer than the first month of life. About half of 
autosomal dominant PKD patients eventually develop kidney failure and 
require dialysis or a kidney transplant. PKD is the fourth leading 
cause of kidney failure, and it is the leading genetic cause of kidney 
failure.
  PKD is characterized by the growth of fluid-filled cysts on the 
nephrons of the kidneys. A polycystic kidney can have thousands of 
these cysts growing on it. In time, the cysts separate from the 
nephrons and continue to enlarge--and the kidneys enlarge along with 
the cysts. A normal, healthy kidney is about the size of a fist; but, 
in fully developed cases of autosomal dominant PKD, a cyst-filled 
kidney can grow to the size of a football or larger and weigh as much 
as 20 to 30 pounds. This leads to decreased kidney function and kidney 
failure.
  PKD also can cause cysts in the liver and problems in other organs, 
such as blood vessels in the brain and heart. High blood pressure is 
common and develops in most patients by age 20 or 30, and brain 
aneurysm is a common cause of death in PKD patients.
  There is no cure for PKD, only minimal treatments such as medicine to 
control high blood pressure, or medicine and surgery to reduce pain, 
and antibiotics for infections. More severe cases of PKD require more 
intense treatment options such as dialysis for failing kidneys or a 
kidney transplant.
  There may be no cure, but there is hope. According to the National 
Institute of Diabetes and Digestive and Kidney Diseases at the National 
Institutes of Health, scientists have begun to identify what triggers 
formation of PKD cysts. And advances in genetics have expanded 
understanding of the abnormal genes responsible for both

[[Page S7179]]

forms of PKD. Recent clinical studies of autosomal dominant PKD are 
exploring new imaging methods for tracking progression of cystic kidney 
disease. Today, magnetic resonance imaging, MRI, is helping scientists 
design better clinical trials for new treatments of adult PKD.
  There is also hope in awareness and education, which offer patients 
opportunities to discuss and learn about their disease, provide more 
resources for research and treatment options for PKD, and lead to more 
events to heighten visibility and aid in fundraising. As I said 
earlier, not many people know about the disease, even in my home State 
of Utah where PKD rates are three times the national average.
  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.
  I urge my colleagues to support it.

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