ACAAI, AGA Institute announce innovative initiative to raise awareness of HAE

May 4 2010

The American College of Allergy, Asthma and Immunology (ACAAI) and the American Gastroenterological Association (AGA)Institute today announced an innovative initiative called "HAE:  Learn About It, Talk About It," at Digestive Disease Week® 2010.  The peer-driven campaign is designed to foster communication between physicians on the front lines of the diagnosis and treatment of hereditary angioedema (HAE), a rare and potentially fatal swelling disease.  

HAE is a genetic disease affecting between 6,000-15,000 people in the United States.  It is characterized by sudden, severe, and painful swelling that can affect any part of the body, including the extremities, face, gastrointestinal tract, urogenital tract and – most dangerously – the tongue or larynx.  Patients with HAE can experience frequent recurrences that can each last for a few days, with up to 100 days of incapacitation per year, making it challenging to excel in school and at work, and even participate in daily activities.  Due to the rarity and lack of awareness of HAE, and symptoms that can mimic other conditions, such as an allergic reaction, HAE is commonly misdiagnosed.  For some patients, it has taken up to 20 years and visits to a variety of physicians to reach the right diagnosis.  

"One-third of undiagnosed HAE patients have undergone exploratory surgery during an abdominal attack, and 70-80 percent of HAE patients experience recurrent abdominal symptoms.  These statistics underscore the importance of educational programs to raise awareness of the disease," said William J. Tremaine, M.D., AGA program advisor and Professor of Medicine at the Mayo Clinic. "Our hope is that, by collaborating on this innovative program, we can help educate gastroenterologists to work with allergists and immunologists to improve the rate of accurate and timely diagnosis of HAE and, therefore, patient care."

"This is an exciting partnership, bringing together two specialties to work towards relieving patient suffering," said Sami Bahna, M.D., DrPH, Chief of Allergy and Immunology at Louisiana State University Health Sciences Center in Shreveport, and President of ACAAI.  "While allergists and immunologists are experts in the diagnosis and treatment of HAE, they truly need the support and dialogue with general practitioners, emergency medicine physicians, gastroenterologists, and other specialists to ensure HAE patients are getting appropriate treatment."

"With new, approved treatment options available, there is more reason than ever for doctors to know about HAE," said Dr. Jonathan Bernstein, ACAAI program advisor and Professor of Medicine, Department of Internal Medicine, Division of Immunology/Allergy at the University of Cincinnati.