Sec. 4. Centers for disease control and prevention

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Part B of title III of the Public Health Service Act is amended by inserting after section 317T (42 U.S.C. 247b–22) the following: With respect to hereditary hemorrhagic telangiectasia (in this section referred to as HHT ), the Director of the Centers for Disease Control and Prevention (in this section referred to as the Director ) shall carry out the following activities: The conduct of population screening described in subsection (c). The identification and conduct of investigations to further develop and support guidelines for diagnosis of, and intervention for, HHT, including cost-benefit studies.

The development of a standardized survey and screening tool on family history. The establishment, in collaboration with a voluntary health organization representing HHT families, of an HHT resource center within the Centers for Disease Control and Prevention to provide comprehensive education on, and disseminate information about, HHT to health professionals, patients, industry, and the public. The conduct or support of public awareness programs in collaboration with medical, genetic, and professional organizations to improve the education of health professionals about HHT.

The Director shall carry out this section through collaborative approaches within the National Center on Birth Defects and Developmental Disabilities and the Division for Heart Disease and Stroke Prevention of the Centers for Disease Control and Prevention for clotting and bleeding disorders. In carrying out population screening under subsection (a)(1), the Director shall— designate and provide funding for a sufficient number of HHT Treatment Centers of Excellence to improve patient access to information, treatment, and care by HHT experts; conduct surveillance by means of a population study, supplemented by sentinel health care provider or center surveillance, and by administrative database analyses as useful, to accurately identify— the prevalence of HHT; and the prevalence of hemorrhagic and embolic stroke, and brain abscess, resulting from HHT; include HHT screening questions in the Behavioral Risk Factor Surveillance System survey conducted by the Centers for Disease Control and Prevention in order to screen a broader population and more accurately determine the prevalence of HHT; provide data collected under paragraph (2)(B) to the Paul Coverdell National Acute Stroke Registry to facilitate— analyses of the natural history of hemorrhagic and embolic stroke in HHT; and development of screening and artery-vein malformation treatment guidelines specific to prevention of complications from HHT; develop and implement programs, targeted for physicians and health care professional groups likely to be accessed by families with HHT, to increase HHT diagnosis and treatment rates through the— establishment of a partnership with HHT Treatment Centers of Excellence designated under paragraph

(1)through the creation of a database of patients assessed at such HHT Treatment Centers of Excellence (including with respect to phenotype information, genotype information, transfusion dependence, and radiological findings); integration of such database with— the universal data collection system used by the Centers for monitoring hemophilia with the blood disorders; and the Paul Coverdell National Acute Stroke Registry; and inclusion of other medical providers who treat HHT patients; and use existing administrative databases on non-HHT Treatment Centers of Excellence patients— to learn about the natural history of HHT and the efficacy of various treatment modalities; and to better inform and develop screening and treatment guidelines associated with improvement in health care outcomes, and research priorities relevant to HHT. In carrying out subsection (c)(1), the Director may designate, as an HHT Treatment Center of Excellence, academic health centers demonstrating each of the following: The academic health center possesses a team of medical experts capable of providing comprehensive evaluation, treatment, and education to individuals with known or suspected HHT and their health care providers. The academic health center has sufficient personnel with knowledge about HHT, or formal collaboration with one or more partnering organizations for personnel or resources, to be able to— respond in a coordinated, multidisciplinary way to patient inquiries; and coordinate evaluation, treatment, and education of patients and their families in a timely manner. The academic health center has the following personnel, facilities, and patient volume: A medical director with— specialized knowledge of the main organ manifestations of HHT; and the ability to coordinate the multidisciplinary diagnosis and treatment of patients referred to the center. Administrative staff with— sufficient knowledge to respond to patient inquiries and coordinate patient care in a timely fashion; and adequate financial support to allow the staff to commit at least 25 to 50 percent of their time on the job to HHT. An otolaryngologist with experience and expertise in the treatment of recurrent epistaxis in HHT patients. An interventional radiologist with experience and expertise in the treatment of pulmonary arteriovenous malformations (AVM). A genetic counselor or geneticist with the expertise to provide HHT-specific genetic counseling to patients and families. On-site facilities to screen for all major organ manifestations of HHT. A patient volume of at least 25 new HHT patients per year. Established mechanisms to coordinate surveillance and outreach with HHT patient advocacy organizations. .

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42 USC 247b–22

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Sec. 4

Centers for disease control and prevention

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