[Congressional Record Volume 144, Number 85 (Thursday, June 25, 1998)]
[Extensions of Remarks]
[Page E1226]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       POLYCYSTIC KIDNEY DISEASE

                                 ______
                                 

                           HON. MERRILL COOK

                                of utah

                    in the house of representatives

                        Wednesday, June 24, 1998

  Mr. COOK. Mr. Speaker, I rise today to share with my colleagues the 
story of a remarkable woman from Salt Lake City. Her story, and that of 
her family, brought home to me the reality of a tragic and widespread 
affliction called Polycystic Kidney Disease, or PKD.
  Heidi Naylor suffers from PKD. So did her grandfather. So does her 
mother. So does her aunt. So do two of her brothers and sisters. Her 
children may ultimately develop this devastating disease as well.
  Heidi's grandfather died from PKD when he was only 43 years old. 
Heidi's mother has undergone surgery six times in a single month to 
treat the disease. She has had 38 surgeries overall and has been on 
dialysis for the last 15 years. Heidi's mother has suffered from 
numerous life threatening complications including punctured lungs, 
pancreatitis, and numerous infections. However, the nurses and 
technicians at her dialysis center call her the ``Energizer Bunny,'' 
because she never gives up. She has survived longer than almost anyone 
else in Utah on dialysis. Heidi told me that her mother is an 
inspiration to her entire family because, ``when you see her and her 
determination to live here on this earth you can't help but feel 
uplifted.''
  Heidi herself is 33 years old with three children, and has also been 
diagnosed with Polycystic Kidney Disease, which is also known as PKD. 
Taking a cue from her indefatigable mother, she is fighting to make a 
difference. Heidi has become involved with Polycystic Kidney Research 
Foundation. She came here to Washington last week, which is when I had 
the pleasure of meeting her. Heidi called herself a rookie advocate, 
but she was extremely articulate in relating her family's compelling 
story, and in advocating a greater federal commitment to PKD research. 
Heidi says that she wants to work to ensure that effective treatments 
are available if her children in case they develop PKD.
  Six hundred thousand Americans suffer from PKD. As Heidi's story 
makes clear, it is a genetic disease. It is also very painful and 
debilitating. Sufferers are afflicted with cysts on both kidneys which 
impair their functions. More than half of those afflicted develop 
kidney failure. In fact, PKD is the third leading cause of kidney 
failure. PKD sufferers make up approximately 10% of the End Stage Renal 
Disease population in the U.S. Medicare and Medicaid End Stage Renal 
Disease coverage for PKD sufferers costs the government over one 
billion dollars annually.
  Congress can help people like Heidi and her family in their fight 
against the pain and the debilitating symptoms and complications of 
PKD.
  First, we can fight for increasing funding for the NIH. I understand 
that the Appropriations Committee is in the process of considering a 
$1.25 billion increase in NIH funding. Mr. Speaker, I urge all of my 
colleagues to support this needed spending increase.
  Second, we should let the NIH know that it should increase the 
funding for PKD research through the National Institute of Diabetes and 
Digestive and Kidney Diseases. NIH funding for this disease is low 
compared to the large number of individuals who are afflicted. 
Increased funding for PKD research would be a wise and compassionate 
investment. Scientists have recently discovered the gene that causes 
most cases of PKD and are working on finding ways to translate this 
discovery into treatments for the disease. Finally, as I have already 
noted, PKD costs the government over a billion dollars a year in 
Medicare and Medicaid coverage for End Stage Renal Disease. Effective 
treatments will eliminate the need for this spending.
  Mr. Speaker, I ask you and my colleagues to consider that a 
relatively small investment in research at the NIH can end a great deal 
of pain and suffering, and ultimately save the Treasury billions of 
dollars. It will also help Heidi Naylor and her family. It will let 
them know that we in the Congress are standing beside them in their 
fight against PKD. And that is the least we can do.

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