2008 -- H 8157

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LC02722

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STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2008

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H O U S E R E S O L U T I O N

PROCLAIMING THE THIRD WEEK IN SEPTEMBER, 2008 TO BE "POLYCYSTIC

KIDNEY DISEASE AWARENESS WEEK" IN THE STATE OF RHODE ISLAND

     Introduced By: Representatives Giannini, Mattiello, Brien, Ferri, and Kennedy

     Date Introduced: April 09, 2008

     Referred To: House read and passed

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     WHEREAS, The noble purpose of designating the third week in September as

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“Polycystic Kidney Disease Awareness Week” is to help raise public awareness and

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understanding of polycystic kidney disease and to foster understanding of the impact this disease

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has on patients and future generations of their families; and

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     WHEREAS, Polycystic kidney disease (PKD) is the most prevalent life-threatening

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genetic disease in the United States. It is a severe, dominantly inherited disease that has a

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devastating impact, in both human and economic terms, on people of all ages, and equally affects

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people of all races, sexes, nationalities, geographic locations, and income levels; and

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     WHEREAS, It is estimated that about 600,000 patients in the United States have a

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genetic inheritance of polycystic kidney disease from one or both parents, and in addition to the

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affliction of those patients, countless friends, loved ones, spouses and caregivers are also affected

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because they shoulder the physical, emotional and financial burdens that PKD generates; and

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     WHEREAS, PKD is one of the four leading causes of kidney failure in the United States,

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and to date there is no cure; and

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     WHEREAS, The vast majority of PKD patients reach kidney failure at an average age of

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53, causing a severe strain on dialysis and kidney transplantation resources and on the delivery of

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health care in the United States, particularly as “baby boomers”, the largest segment of the

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population, continue to age; and

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     WHEREAS, End stage renal disease is one of the fastest growing components of the

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Medicare budget, and PKD significantly contributes to that cost by an estimated $2,000,000,000

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annually for dialysis, kidney transplantation and related therapies; and

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     WHEREAS, Polycystic kidney disease is a systemic disease that causes damage to the

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kidney, cardiovascular, endocrine, hepatic, and gastrointestinal organ systems. It instills patients

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with fear of an unknown future with a life-threatening genetic disease, and apprehension over

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possible genetic discrimination; and

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     WHEREAS, The severity of symptoms from PKD and limited public awareness of the

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disease causes many patients to live in denial, foregoing regular visits to their physicians or

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avoiding good health management which would help avert more severe complications when

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kidney failure occurs; and

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     WHEREAS, People who have chronic, life-threatening diseases like polycystic kidney

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disease have a predisposition to depression (seven times the national average) and its resultant

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consequences due to their anxiety over pain, suffering and premature death; and

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     WHEREAS, Polycystic kidney disease is a verifiable example of how collaboration,

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technological innovation, scientific momentum, and public/private partnerships can generate

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therapeutic interventions that directly benefit PKD sufferers, save billions of dollars under

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Medicare, Medicaid and other programs for dialysis, kidney transplants, immunosuppressant

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drugs and related therapies, and make available several thousand openings on the kidney

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transplant waiting list; and

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     WHEREAS, Improvements in diagnostic technology and the expansion of scientific

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knowledge about PKD have led to the discovery of the three primary genes that cause PKD and

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the three primary protein products of the genes. These improvements have also led to the

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understanding of cell structures and signaling pathways that cause cyst growth that has produced

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multiple PKD clinical drug trials; and

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     WHEREAS, There are thousands of volunteers nationwide who are dedicated to

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expanding essential research, fostering public awareness and understanding of PKD, educating

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PKD patients and their families about the disease to improve their treatment and care, providing

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appropriate moral support, and encouraging people to become organ donors; and

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     WHEREAS, These volunteers engage in an annual national awareness event held during

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the third week of September, thus making this week an appropriate time to recognize and promote

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public understanding for polycystic kidney disease; now, therefore be it

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     RESOLVED, That this House of Representatives of the State of Rhode Island and

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Providence Plantations hereby proclaims the third week in September, 2008, to be “Polycystic

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Kidney Disease Awareness Week”; and be it further

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     RESOLVED, That this House hereby urges all Rhode Islanders and appropriate

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departments of state to join us in supporting the goals and ideals of “Polycystic Kidney Disease

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Awareness Week” by helping to raise awareness and understanding of PKD and the impact this

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disease has on patients and future generations of their families; and be it further

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     RESOLVED, That the Secretary of State be and he hereby is authorized and directed to

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transmit a duly certified copy of this resolution to Paul A. Doughty, President of the Providence

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Firefighters Local 799 IAFF.

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LC02722

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