WASHINGTON, DC - Congressman Jim Himes (CT-4) and Congressman Ed Royce (CA-39) today introduced H.R. 1849, the Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2015. This bipartisan legislation is designed to improve the diagnosis and treatment of hereditary hemorrhagic telangiectasia (HHT).

“HHT is a serious genetic disorder that can lead to sudden internal bleeding, stroke and disability, and even death. Unfortunately, only nine in ten affected individuals are diagnosed and the only visible warning sign is often a common nosebleed,” said Rep. Himes. “I was pleased to introduce the bipartisan HHT Diagnosis and Treatment Act with Representative Royce to support much-needed federal research and surveillance efforts to improve HHT early diagnoses and interventions. Through the work of the NIH and CDC, we can help reduce suffering for HHT patients, further our nation’s strong commitment to medical research and lower health care costs.”

"While a cure does not exist for this terrible disease, early diagnoses and preventative treatment can lessen the suffering of those living with HHT," said Rep. Royce. "The Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act will result in more early detection of HHT, an emphasis on preventative care, lower healthcare costs for families taking care of a patient, and lives saved."

HHT is a genetic bleeding disorder characterized by abnormal blood vessels. It affects approximately 1 in 5,000 people of all genders and backgrounds. There are tests and treatments available for many HHT symptoms, but the disease commonly goes mis- or undiagnosed. The HHT Diagnosis and Treatment Act would seek to remedy this by creating the first federal HHT Initiative, which includes:

  • Launching a HHT Initiative at the National Institutes of Health to advance research on early detection, screening, diagnosis and treatment of HHT
  • Establishing a resource center at the Centers for Disease Control to provide diagnosis and treatment guidelines to health professionals and educational information to patients and the public
  • Authorizing the Centers for Disease Control to conduct a population study to more accurately identify the prevalence of HHT and HHT-related hemorrhagic strokes