To amend the Public Health Service Act to improve the diagnosis and treatment of hereditary hemorrhagic telangiectasia, and for other purposes.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2011''.
SEC. 2. FINDINGS.
The Congress finds as follows: (1) Hereditary hemorrhagic telangiectasia (``HHT'') is a largely undiagnosed or misdiagnosed vascular genetic bleeding disorder that causes abnormalities of the blood vessels. A person with HHT has the tendency to form blood vessels that lack the capillaries between an artery and vein. HHT can cause spontaneous hemorrhage or stroke when brain or lung arteriovenous malformations, which are tangled blood vessels, rupture unexpectedly, in all age groups. In addition to hemorrhagic stroke, embolic stroke and brain abscess occur in approximately 30% of persons with HHT caused by artery-vein malformations in the lung (due to lack of capillaries between the arterial and venous systems which normally filter out clots and bacteria), causing disability and sudden premature death. (2) One in 5,000 American children and adults suffer from HHT. (3) Studies have found an increase in morbidity and mortality rates for individuals who suffer from HHT. (4) Due to the widespread lack of knowledge, accurate diagnosis, and appropriate intervention, 90 percent of HHT- affected families are at risk for preventable life-threatening and disabling medical incidents such as stroke. (5) Early detection, screening, and treatment...