Whereas, according to the HHT Foundation
International, 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 people 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
according to the HHT Foundation International, 20 percent of those with HHT,
regardless of age, suffer death and disability;
Whereas
according to the HHT Foundation International, 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
the HHT Foundation International estimates 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 2010 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.