[Congressional Record Volume 155, Number 71 (Monday, May 11, 2009)]
[Senate]
[Page S5332]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  SENATE RESOLUTION 141--RECOGNIZING JUNE 2009 AS THE FIRST NATIONAL 
   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

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

                              S. Res. 141

       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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