MONKTON, Md. (PRWEB)
July 23, 2021

Hemophilia Treatment Centers (HTCs) Will Now Also Treat Rare HHT Disease

Cure HHT, a non-profit organization headquartered in Maryland, is the only patient advocacy organization in the world funding research, awareness and education for HHT patients, their families and the medical/scientific community. HHT (Hereditary Hemorrhagic Telangiectasia) is the second most common genetic disease that causes bleeding, affecting an estimated 1.4 million people of all races and backgrounds globally. HHT affects 1 in 5,000 people, and is as common as Cystic Fibrosis, perhaps the best known of the rare diseases.

Thanks to a new program proposed by Cure HHT and funded by the Centers for Disease Control (CDC), Cure HHT was able to collaborate with the American Thrombosis & Hemostasis Network (ATHN) to train Hemophilia Treatment Center (HTC) staff, identify the subspecialists necessary to provide HHT care, and establish a patient referral and treatment program for HHT patients. The first two such HHT-HTC Centers are now operational and accepting patients at the Michigan Medicine Hemophilia and Coagulation Disorders Program (Ann Arbor, Michigan), and the Indiana Hemophilia & Thrombosis Center (Indianapolis, Indiana).

HHT creates abnormalities in blood vessels, called telangiectasias, which are fragile and susceptible to rupture and bleeding, and untreated may result in lung and brain hemorrhage, stroke, heart failure and death. The most common symptom of HHT is frequent and severe nose bleeds, often dismissed. One HHT diagnosis means there is a whole family of potentially affected people spanning generations. There is, as yet, no cure, but existing treatments can be effective if HHT is diagnosed early. Importantly, 90% of those with HHT are unaware that they have the disease. http://www.curehht.org

Thirty years ago, in 1991 the organization created its first HHT Center of Excellence at Yale University School of Medicine. “It is a testament to our 30th anniversary that when we open our newest HHT Centers of Excellence in 2021 in Alabama, Arizona and Florida we will have a total of 30 Centers of Excellence in North America, and more to come. Yet, we cannot create HHT Centers of Excellence fast enough to reach everyone who needs one.”

Cure HHT recognized years ago that in many ways the treatment and management of HHT could be compared to the treatment for hemophilia, the hereditary condition where the blood fails to coagulate. Due to the efforts of The National Hemophilia Foundation, created in 1948, there are more than 130 federally funded Hemophilia Treatment Centers (HTC Centers) in the U.S. Many of these have teams of doctors and specialists such as hematologists, genetics counselors and nurse coordinators — mirroring the team needed for HHT patients.

What was needed was a pilot program to see if the HTC Centers could also treat HHT patients, potentially expanding access to care significantly for HHT patients, especially in areas where no HHT Center of Excellence exists. Enter Congressman David E. Price (D, 4th District, North Carolina) who in 2017 made securing federal funding for the pilot program one of his three top legislative priorities.

These new HHT-HTCs will provide comprehensive care for patients and families with HHT, including: Management of bleeding; referral to ENT providers affiliated with the HHT team; screening for and management of iron deficiency anemia; screening for visceral AVMs; genetic counseling and evaluation of at-risk family members. When possible in patients without an existing diagnosis of HHT, a detailed evaluation will be provided, including genetic counseling, in order to determine whether the patient is affected and to identify the familial HHT mutation.

“The Indiana Hemophilia & Thrombosis Center is excited to announce our partnership with Cure HHT as an HHT-HTC Treatment Center. This designation is truly an honor and reinforces our center’s ongoing commitment to providing expert HHT care, allowing our patients to flourish,” comments Magdalena Lewandowska, MD, Director, Indiana HHT-HTC Treatment Center.

“We at Michigan Medicine are excited to join the HHT community. At our Hemophilia Treatment Center (HTC) we are already working with our colleagues to treat a wide range of patients with HHT. We look forward to developing our program to become a full Center of Excellence in the near future,” adds Suman Sood, MD, Director, University of Michigan HHT-HTC Treatment Center

“This is a promising first step towards making care for HHT patients available throughout the country by leveraging expertise that already exists in the Hemophilia Treatment Centers,” remarked Marianne S. Clancy, Executive Director of Cure HHT. “Our goal is to establish an HHT patent referral and treatment program at several HTCs across the United States.”

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