Today, U.S. Representative Ed Royce (R-CA) and U.S. Representative Jim Himes (D-CT) introduced H.R. 1849, the Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2015, legislation to improve the diagnosis and treatment of hereditary hemorrhagic telangiectasia (HHT):

"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 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.”

HHT, also known as Osler-Weber-Rendu Syndrome, is a commonly misdiagnosed genetic disorder that afflicts one in 5,000 Americans and over 1.4 million people across the world. A person with HHT may form blood vessels without the capillaries, tiny blood vessels that pass blood from arteries to veins, that are usually present in the body. Those with HHT experience a variety of symptoms, including chronic nosebleeds, disfiguring skin lesions, seizures, and bleeding into major organs such as the lungs and brain. HHT affects individuals of all ages, races and genders and there is currently no cure.

The Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2015 creates a federally led and financed initiative for early diagnosis and appropriate treatment of HHT that will prevent the premature deaths of HHT patients and lower health care costs through proven treatment interventions for those who have HHT.

Specifically, the bill establishes a HHT resource center within the Centers for Disease Control and Prevention (CDC) to provide comprehensive education on, and disseminate information about, HHT to health professionals, patients, and the public. It also directs the CDC to conduct a population study, supplemented by sentinel health care provider or center surveillance, and administrative database analyses, to more accurately identify the prevalence of HHT and hemorrhagic strokes resulting from the disease. Additionally, the legislation requires the National Institutes of Health (NIH) to implement a HHT initiative to assist in coordinating activities to improve early detection, screening, and treatment of people who suffer from HHT. The NIH initiative will focus on advancing research on the causes, diagnosis, and treatment of HHT.