[Congressional Bills 106th Congress]
[From the U.S. Government Printing Office]
[H. Res. 537 Introduced in House (IH)]







106th CONGRESS
  2d Session
H. RES. 537

 Expressing the sense of the House of Representatives with respect to 
    the serious national problems associated with polycystic kidney 
                                disease.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             June 27, 2000

    Mrs. Thurman (for herself and Mr. Shaw) submitted the following 
      resolution; which was referred to the Committee on Commerce

_______________________________________________________________________

                               RESOLUTION


 
 Expressing the sense of the House of Representatives with respect to 
    the serious national problems associated with polycystic kidney 
                                disease.

Whereas polycystic kidney disease (``PKD'') is the most prevalent life-
        threatening genetic disease in the United States, affecting more 
        Americans than the combined number of those in the United States who 
        have cystic fibrosis, sickle cell anemia, hemophilia, muscular 
        dystrophy, Down's syndrome, and Huntington's disease;
Whereas an estimated 600,000 American's have received ``an inheritance they 
        don't want and can't give back'' in the form of a dominant genetic 
        ``bequest'' called PKD, and countless additional friends, loved-ones, 
        spouses and care givers must shoulder the physical, emotional, and 
        financial burdens it causes;
Whereas PKD is a severe, monogenetic disease that has a devastating impact, in 
        both human and economic terms, on Americans of all ages and equally 
        affects people of all races, genders, nationalities, geographic 
        locations, and income levels;
Whereas, based on NIH prevalence estimates for PKD in the United States, 
        approximately 1,400 PKD patients reside in each of America's 435 
        Congressional Districts;
Whereas the vast majority of those who have PKD reach kidney failure and do so 
        at the average age of 53, and since the largest segment of our 
        population, America's ``baby boomers'' are rapidly reaching that age, 
        PKD may well cause a colossal strain on dialysis and kidney 
        transplantation resources and on the general delivery of health care in 
        America;
Whereas PKD is one of the four leading causes of kidney failure in America, 
        causing approximately 2,000 new cases of end stage renal disease 
        annually and premature death for an estimated 1,000 to 1,500 people 
        annually as the direct result of this horrific malady;
Whereas end stage renal disease is the fastest growing component of the Medicare 
        budget each year and PKD contributes to that cost by an estimated 
        $2,000,000,000 annually for dialysis, kidney transplantation, and 
        related therapies;
Whereas the fear of an unknown future with a life-threatening genetic disease, 
        the apprehension over possible genetic discrimination, the severity of 
        the symptoms which PKD patients suffer through, and the limited public 
        awareness of the disease causes many to live in denial and thus forego 
        regular visits to their physicians and overlook good, general health 
        management;
Whereas PKD frequently goes undetected and an estimated 500,000 of the 600,000 
        Americans who have it don't even know it, often resulting in devastating 
        emotional trauma when a diagnosis is finally made;
Whereas PKD is a systemic disease that causes other major risk factors to ones 
        health that requires prolonged and expensive treatment for symptoms such 
        as high blood pressure, critical kidney infections, frequent episodes of 
        kidney stones, potentially life-ending aneurysms, polycystic livers, 
        polycystic reproductive organs (ovaries and testes), polycystic 
        pancreases, abdominal hernias, diverticulitis, and two forms of heart 
        disease;
Whereas many Americans with life-threatening genetic diseases like PKD are at 
        risk for losing their health and life insurance, losing their jobs and/
        or their chances for promotion because they have a preexisting chronic, 
        potentially lethal and costly disease;
Whereas those individuals who have chronic, life-threatening diseases like PKD 
        have a seven times the national average predisposition toward depression 
        and its resultant consequences;
Whereas there is currently no method to prevent, treat, or cure PKD, nor is 
        there any current procedure to control the progression of it;
Whereas reducing the tremendous health and human burden of PKD and its enormous 
        economic toll depends on discovering a treatment to stop it in its 
        tracks and ultimately producing a genetic ``preemergent'' form of gene 
        therapy to break the chain of genetic inheritance for future generations 
        of Americas's PKD families;
Whereas improvements in diagnostic technology and the expansion of scientific 
        knowledge about PKD have led to the discovery of the two primary genes 
        that cause PKD, the two primary protein products, and the understanding 
        of cell structures and signaling pathways that cause cyst growth are 
        predictive of the development of interventional therapies in as few as 
        five years given the appropriate public and private funding of 
        biomedical research;
Whereas the scientific momentum in PKD research has caused the head of America's 
        Human Genome Project, Dr. Francis Collins, to call PKD ``one of the 
        hottest areas of scientific investigation in all of biochemistry'';
Whereas after extensive review and deliberations, a panel of top PKD scientists, 
        sanctioned and convened by the National Institutes of Diabetes, 
        Digestive and Kidney Diseases (``NIDDK''), has found that ``the field is 
        on the threshold of major advances, but that effective treatment of the 
        polycystic kidney disorders will require the efforts of scientists and 
        physicians from nearly all of the disciplines of renal science, and will 
        require NIDDK to strongly commit to substantial increases in research 
        funding now and in the years to come'';
Whereas NIDDK's expert PKD Panel has developed the PKD Strategic Plan in which 
        they have identified a comprehensive strategy for PKD research leading 
        to a treatment and cure to be funded by the National Institutes of 
        Health, and has recommended a base funding level of $20,000,000 for PKD 
        research at the National Institutes of Health in fiscal year 2001; and
Whereas the House of Representatives as an institution and Members of Congress 
        as individuals who represent America's 600,000 PKD patients are in 
        unique positions to help raise public awareness about the need for 
        increased funding for research leading to a soon treatment and cure: 
        Now, therefore, be it
    Resolved, That it is the sense of the House of Representatives 
that--
            (1) the Federal Government has a responsibility--
                    (A) to continue to increase research funding, as 
                recommended by NIDDK's expert PKD Panel in its PKD 
                Strategic Plan, so that the development of a treatment 
                and cure for PKD may soon be discovered;
                    (B) to endeavor to raise awareness about the 
                importance of early diagnosis, strict blood-pressure 
                control, and timely treatment of PKD symptoms;
                    (C) to continue to consider ways to improve access 
                to, and the quality of, health care, dialysis, and 
                kidney transplantation or PKD and other kidney 
                patients; and
                    (D) to take an active role in increasing organ 
                donation across the country;
            (2) all Americans should take an active role in reviewing 
        their health condition and noting if they may have PKD symptoms 
        such a family history of kidney disease, frequent kidney and/or 
        urinary tract infections, frequent episodes of kidney stones, 
        chronic lower-back or flank pain, high blood pressure, and 
        blood in their urine; and
            (3) national and community organizations and health care 
        providers should endeavor to promote awareness of PKD and its 
        complications and should encourage early detection of PKD 
        through regular screenings, education, and by providing 
        information, support, and access to services.
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