[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 141 Introduced in Senate (IS)]

111th CONGRESS
  1st Session
S. RES. 141

  Recognizing June 2009 as the first National Hereditary Hemorrhagic 
Telangiecstasia (HHT) month, established to increase awareness of HHT, 
     which is a complex genetic blood vessel disorder that affects 
           approximately 70,000 people in the United States.


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                   IN THE SENATE OF THE UNITED STATES

                              May 11, 2009

   Mr. Johnson (for himself and Mr. Bennett) submitted the following 
 resolution; which was referred to the Committee on Health, Education, 
                          Labor, and Pensions

_______________________________________________________________________

                               RESOLUTION


 
  Recognizing June 2009 as the first National Hereditary Hemorrhagic 
Telangiecstasia (HHT) month, established to increase awareness of HHT, 
     which is a complex genetic blood vessel disorder that affects 
           approximately 70,000 people in the United States.

Whereas Hereditary Hemorrhagic Telangiecstasia (HHT), also referred to as Osler-
        Weber-Rendu Syndrome, is a long-neglected national health problem that 
        affects approximately 70,000 (1 in 5,000) people in the United States 
        and 1,200,000 worldwide;
Whereas HHT is an autosomal dominant, uncommon complex genetic blood vessel 
        disorder, characterized by telangiectases and artery-vein malformations 
        that occurs in major organs including the lungs, brain, and liver, as 
        well as the nasal mucosa, mouth, gastrointestinal tract, and skin of the 
        face and hands;
Whereas left untreated, HHT can result in considerable morbidity and mortality 
        and lead to acute and chronic health problems or sudden death;
Whereas 20 percent of those with HHT, regardless of age, suffer death and 
        disability;
Whereas due to widespread lack of knowledge of the disorder among medical 
        professionals, approximately 90 percent of the HHT population has not 
        yet been diagnosed and is at risk for death or disability due to sudden 
        rupture of the blood vessels in major organs in the body;
Whereas it is estimated that 20 to 40 percent of complications and sudden death 
        due to these ``vascular time bombs'' are preventable;
Whereas patients with HHT frequently receive fragmented care from practitioners 
        who focus on 1 organ of the body, having little knowledge about 
        involvement in other organs or the interrelation of the syndrome 
        systemically;
Whereas HHT is associated with serious consequences if not treated early, yet 
        the condition is amenable to early identification and diagnosis with 
        suitable tests, and there are acceptable treatments available in 
        already-established facilities such as the 8 HHT Treatment Centers of 
        Excellence in the United States; and
Whereas adequate Federal funding is needed for education, outreach, and research 
        to prevent death and disability, improve outcomes, reduce costs, and 
        increase the quality of life for people living with HHT: Now, therefore, 
        be it
    Resolved, That the Senate--
            (1) recognizes the need to pursue research to find better 
        treatments, and eventually, a cure for HHT;
            (2) recognizes and supports the HHT Foundation 
        International as the only advocacy organization in the United 
        States working to find a cure for HHT while saving the lives 
        and improving the well-being of individuals and families 
        affected by HHT through research, outreach, education, and 
        support;
            (3) supports the designation of June 2009 as National 
        Hereditary Hemorrhagic Telangiecstasia (HHT) month, to increase 
        awareness of HHT;
            (4) acknowledges the need to identify the approximately 90 
        percent of the HHT population that has not yet been diagnosed 
        and is at risk for death or disability due to sudden rupture of 
        the blood vessels in major organs in the body;
            (5) recognizes the importance of comprehensive care centers 
        in providing complete care and treatment for each patient with 
        HHT;
            (6) recognizes that stroke, lung, and brain hemorrhages can 
        be prevented through early diagnosis, screening, and treatment 
        of HHT;
            (7) recognizes severe hemorrhages in the nose and 
        gastrointestinal tract can be controlled through intervention, 
        and that heart failure can be managed through proper diagnosis 
        of HHT and treatments;
            (8) recognizes that a leading medical and academic 
        institution estimated that $6,600,000,000 of 1-time health care 
        costs can be saved through aggressive management of HHT in the 
        at-risk population; and
            (9) encourages the people of the United States and 
        interested groups to observe and support the month through 
        appropriate programs and activities that promote public 
        awareness of HHT and potential treatments for it.
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