[Congressional Record (Bound Edition), Volume 156 (2010), Part 11]
[Senate]
[Page 15532]
[From the U.S. Government Publishing Office, www.gpo.gov]




           NATIONAL POLYCYSTIC KIDNEY DISEASE AWARENESS WEEK

  Mr. HATCH. Madam President, I speak today, along with my colleague, 
Senator Bob Bennett, in recognition of ``National Polycystic Kidney 
Disease Awareness Week''. Senator Herb Kohl and I introduced S. Res. 
592 on July 22 to designate September 13-19, 2010, as the National PKD 
Awareness Week for 2010, and Senator Bennett was a cosponsor of the 
resolution. S. Res. 592 passed the Senate by unanimous consent on July 
29, 2010. I thank my colleagues for their support.
  Polycystic kidney disease, also known as PKD, is a life-threatening, 
genetic disease affecting more than 600,000 adults and children in the 
United States and 12.5 million people worldwide. In fact, PKD is one of 
the top three most prevalent life-threatening genetic diseases in the 
world. It is, in fact, one of the most deadly diseases of which you 
have likely never heard. To help put it into perspective, more people 
have been diagnosed with PKD than have been diagnosed with cystic 
fibrosis, sickle cell anemia, hemophilia, muscular dystrophy, Down's 
syndrome, and Huntington's disease combined. However, these diseases 
are much more well-known than PKD. I take particular interest in PKD 
because so many Utahns suffer from the disease. According to the PKD 
Foundation, approximately 5,000 Utahns have been diagnosed with PKD and 
end stage renal disease--ESRD--instances in Utah are almost three times 
the national average.
  Polycystic kidney disease often goes unnoticed due to the fact there 
are no telltale symptoms in the early stages of the disease. Many 
people who have PKD are not diagnosed until the disease has already 
affected other organs. More than half of individuals diagnosed will 
reach end-stage renal failure and require dialysis or a kidney 
transplant in order to survive. When a kidney has been affected by PKD, 
fluid-filled cysts develop on the kidney. These cysts can range in size 
from that of a pinhead to the size of a grapefruit. The size and weight 
of each cystic kidney can grow to that of a football or basketball and 
weigh as much as 38 pounds. Other diseases and symptoms may show up as 
the disease progresses and, unfortunately, this is often how PKD is 
diagnosed. Examples of such symptoms are urinary tract infections, 
hypertension, kidney stones, high blood pressure, potentially fatal 
heart diseases, and aneurysms.
  There are two forms of polycystic kidney disease: autosomal dominant 
PKD and autosomal recessive PKD. Autosomal dominant PKD is more serious 
and it affects one in every 500 people and is commonly diagnosed in 
adulthood. Every child born to an affected parent has a 50 percent 
chance of inheriting the disease themselves. The other form, autosomal 
recessive PKD, also called ARPKD, is diagnosed in children. 
Approximately 30 percent of the infants diagnosed with ARPKD will die 
within the first month of life; and of the 70 percent who survive 
infancy, one-third will require a kidney transplant by the very young 
age of 10.
  As of today, there is no cure or treatment for PKD. There are ways to 
alleviate pain, and a healthy lifestyle can delay kidney failure; 
however, the only way to effectively stop the symptoms is by kidney 
transplant. Unfortunately, many who are waiting for a transplant will 
not survive long enough to receive it.
  Aside from the debilitating nature of the disease, the costs 
associated with PKD are staggering. The current estimation of what PKD 
costs Federal health care programs annually is at least $2 billion. 
This can be broken down as: $78,000 per year, per patient, for 
dialysis; $100,000-$150,000 per kidney transplant; and $15,000-$20,000 
per year, per patient, for post-transplant immunosuppressive drugs.
  It is clear that PKD is a very serious disease that should be 
receiving more attention. As we increase our understanding and 
awareness of PKD, we also increase our ability to find treatments and 
eventually, a cure for this disease; and that is why I am proud to have 
helped designate this week as ``National Polycystic Kidney Disease 
Awareness Week''.

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