An online survey conducted the Harris Poll and sponsored by CSL Behring show that a vast majority of HAE patients (94%) say it’s important their preventive therapy specifically corrects C1 esterase inhibitor (C1-INH) deficiency. Both people living with HAE (94%) and the physicians who treat them (91%) agree that a reduction in the number of attacks is the leading factor when evaluating prophylactic therapy, followed closely by the importance of safety.

“This data shows that those living with HAE and their physicians place importance on preventing more attacks, with most people living with HAE preferring a prophylactic treatment that is effective in reducing the number of attacks rather than a treatment that offers less frequent administration,” says Jonathan A. Bernstein, M.D., Professor of Medicine, Department of Internal Medicine, Division of Immunology and Allergy Section, University of Cincinnati College of Medicine. “A treatment that may offer less frequent administration may seem appealing, but these findings suggest that many people living with HAE live with daily fear, stress and anxiety related to having an attack. These substantial burdens should be important points of consideration when discussing and developing treatment plans.”

According to the survey findings, physicians do recognize the negative impact of HAE on virtually every aspect of their patients’ lives, but the survey results also show that people living with HAE view the disease as having a more significant impact on their daily activities. For example, 43% of people living with HAE say the disease has a major negative impact on their work or studies, but only 9% of physicians say the same about their patients.

“HAE affects my life daily; with the concerns and stress of not only maintaining my own health as a patient, but also that of my children, both of whom also have HAE,” said Cheryl French, a person living with HAE.

The survey findings demonstrate physicians and people living with HAE are generally aligned when it comes to making treatment decisions, but results also show that physicians and people living with HAE could benefit from improved dialogue on the factors that are most important in selecting a therapy.

Other key findings include the following:


  • More than 95% of people living with HAE say they are determined to do whatever it takes to avoid HAE attacks and most physicians (82%) agree
    People living with HAE (97%) and physicians (99%) almost universally agree that the best way to manage HAE is to take measures to prevent attacks

Impact of HAE on Lifestyle

  • 76% of people living with HAE say they worry about having another attack on a daily basis
  • Over 8 in 10 people living with HAE consider managing and recovering from an HAE attack to be disruptive to their overall quality of life
  • 70% of people living with HAE rate their HAE attacks as severe/very severe
  • 68% of people living with HAE say having HAE has a major or moderate negative impact on their work/studies

(Source: CSL Behring)