The physical and mental burden of HAE may be greater than you think1-3

In a survey of 110 patients with HAE taking LTP treatments,1

~50%

OF PATIENTS SAID THEY DID NOT TELL THEIR PHYSICIANS ABOUT EVERY ATTACK*

Among several options, the most selected reason patients had for underreporting attacks was, “I don’t feel there is anything my HCP can do.”*

*These findings are a result of an online survey conducted by the Harris Poll, sponsored by Ionis, of 150 US adults diagnosed with HAE by a health care provider.1

AECT

Use the Angioedema Control Test (AECT) to evaluate and monitor disease control

The AECT is a 4-question test completed by patients and was developed and validated in 2 versions: a 4-week recall period and a 3-month recall period. The AECT is included among the validated instruments recommended by the 2025 WAO Guidelines for routine assessment of disease control in patients with HAE.4,5†

†The AECT was validated in 81 patients with recurrent angioedema, including 25 with HAE or acquired angioedema due to C1-INH deficiency. It was not specifically validated for HAE.4

Deeper patient conversations can help uncover the impact of HAE

Assessing the impact of HAE on patients’ daily lives may provide additional perspective when evaluating treatment goals and patient needs.

Consider questions such as:

  • What are you avoiding or doing differently because of your HAE?
  • Are there activities, goals, or experiences you’ve put off because of HAE?
  • Do you feel your treatment allows you to live the life you want to live? Why or why not?  

HAE=hereditary angioedema; HCP=health care professional; LTP=long-term prophylactic treatment; WAO=World Allergy Organization.

References: 1. Data on file. Ionis Pharmaceuticals. 2. Busse PJ, Christiansen SC, Riedl MA, et al. US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema. J Allergy Clin Immunol Pract. 2021;9(1):132-150.e3. doi:10.1016/j.jaip.2020.08.046 3. Jain G, Walter L, Reed C, et al. How do patients and physicians communicate about hereditary angioedema in the United States? PLoS One. 2021;16(12):e0260805. doi:10.1371/journal.pone.0260805 4. Weller K, Donoso T, Magerl M, et al. Validation of the Angioedema Control Test (AECT)—a patient-reported outcome instrument for assessing angioedema control. J Allergy Clin Immunol Pract. 2020;8(6):2050-2057.e4. doi:10.1016/j.jaip.2020.02.038 5.Vázquez DO, Giavina-Bianchi P, Josviack D, et al. The 2025 WAO Guidelines for the classification, diagnosis, and treatment of hereditary angioedema, with consideration of worldwide disparities. World Allergy Organ J. 2026;19(5):101335. doi:10.1016/j.waojou.2026.101335