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
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.