Sec. 2. Findings

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A research copy — for the controlling text, always check the official state or federal source. Not legal advice.

The Congress finds as follows: Hereditary hemorrhagic telangiectasia (referred to in this section as HHT ) is a largely undiagnosed or misdiagnosed vascular genetic bleeding disorder resulting in artery-vein malformations (referred to in this section as AVMs ), which lead to preventable, catastrophic and disabling consequences. HHT can cause sudden death at any age, unless detected and treated. Early detection, screening, and use of readily available treatment can prevent premature deaths and long-term health complications resulting from HHT.

A person with HHT has the tendency to form blood vessels that lack the capillaries between an artery and vein. HHT often results in spontaneous hemorrhage or stroke from brain or lung AVMs. In addition to hemorrhagic stroke, embolic stroke and brain abscess occur in approximately 30 percent of individuals with HHT AVMs in the lung (due to lack of capillaries between the arterial and venous systems that normally filter out clots and bacteria). One in 5,000 American children and adults suffer from HHT.

Studies have found an increase in morbidity and mortality rates for individuals who suffer from HHT. 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. Early detection, screening, and treatment can prevent premature deaths, spontaneous hemorrhage, hemorrhagic stroke, embolic stroke, brain abscess, and other long-term health care complications resulting from HHT.

HHT is an important health condition with serious health consequences which are amenable to early identification and diagnosis with suitable tests, and acceptable and available treatments in established treatment centers. Timely identification and management of HHT cases is an important public health objective because it will save lives, prevent disability, and reduce direct and indirect health care costs expenditures. A recent study has found use of a genetic testing model for HHT diagnosis saves $9,900,000 if screening is limited to individuals within the family groups that have the gene defect, leading to early intervention in individuals found to have treatable AVMs.

Without a new program for early detection, screening, and treatment, 14,000 children and adults who suffer from HHT in the population today will suffer premature death and disability.