III 

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. 

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 


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•SRES 141 IS 

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 

1 Resolved, That the Senate— 


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1 (1) recognizes the need to pursue research to 

2 find better treatments, and eventually, a cure for 

3 HHT; 

4 (2) recognizes and supports the HHT Founda5 tion International as the only advocacy organization 

6 in the United States working to find a cure for 

7 HHT while saving the lives and improving the well8 being of individuals and families affected by HHT 

9 through research, outreach, education, and support; 

10 (3) supports the designation of June 2009 as 

11 National Hereditary Hemorrhagic Telangiecstasia 

12 (HHT) month, to increase awareness of HHT; 

13 (4) acknowledges the need to identify the ap14 proximately 90 percent of the HHT population that 

15 has not yet been diagnosed and is at risk for death 

16 or disability due to sudden rupture of the blood ves17 sels in major organs in the body; 

18 (5) recognizes the importance of comprehensive 

19 care centers in providing complete care and treat20 ment for each patient with HHT; 

21 (6) recognizes that stroke, lung, and brain hem22 orrhages can be prevented through early diagnosis, 

23 screening, and treatment of HHT; 

24 (7) recognizes severe hemorrhages in the nose 

25 and gastrointestinal tract can be controlled through 


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1 intervention, and that heart failure can be managed 

2 through proper diagnosis of HHT and treatments; 

3 (8) recognizes that a leading medical and aca4 demic institution estimated that $6,600,000,000 of 

5 1-time health care costs can be saved through ag6 gressive management of HHT in the at-risk popu7 lation; and 

8 (9) encourages the people of the United States 

9 and interested groups to observe and support the 

10 month through appropriate programs and activities 

11 that promote public awareness of HHT and poten12 tial treatments for it. 

Æ 


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