An upclose photo of a neon sign reading 'Get HAE under control'. An upclose photo of a neon sign reading 'Get HAE under control'.

Assess HAE Impact Assessing HAE disease control is critical to patient care

Assessing disease control

Treatment guidelines recommend individualizing HAE management1

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Variability in symptomatology, frequency, and intensity occurs both between patients and within the same patient over time1

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HAE management strategies must be individualized to each patient's unique needs and continuously adjusted in response to symptom fluctuations1

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Monitoring disease activity, impact, and control is especially important during long-term prophylactic therapy2

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Although disease severity, activity, impact, and control are related, they are conceptually distinct measures of HAE2

Patient burden

The physical and mental burden of breakthrough attacks may be greater than what your patients report1,3,4

In a survey of 110 patients with HAE taking long-term prophylaxis, nearly half said they didn't tell their physician about every attack3*

Many patients are still living with undesirable trade-offs3,5-8:

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Burdensome dosing7

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Breakthrough attacks8

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GI side effects8

In a survey of
patients with HAE,3*

~50%

OF PATIENTS REPORTED THEY

MISS OUT

ON SOCIAL EVENTS DUE TO HAE ATTACKS

*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.3
AECT

Ask your patients about the impact HAE has on their lives

Some patients may be hesitant to bring up symptoms outside of attack frequency particularly if they feel there’s nothing their health care provider can do.

  • Proactively asking about HAE disease burden can help evaluate a patient’s treatment plan
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Ask
How does HAE affect your daily life right now?
How often did you change or cancel plans this month due to an attack or worry over an attack?

Consider using validated disease assessment tools to evaluate disease control

The angioedema control test (AECT) is a simple way to assess disease control and is recommended by the 2021 WAO/EAACI guidelines for the management of HAE.* Patients answer 4 questions about their disease control. Each question is scored 0-4 for a total of 16 points.2,9

Use this interactive AECT with your patients or download below.

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Frequency of attacks

In the past 4 weeks, how often have you had angioedema?

Want to use the AECT for your practice?

Print this simple guide and AECT tearsheet to use in your clinical consults with patients.

Download AECT practice tool

*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.9

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References: 1. 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 2. Maurer M, Magerl M, Betschel S, et al. The international WAO/EAACI guideline for the management of hereditary angioedema—the 2021 revision and update. Allergy. 2022;77(7):1961-1990. doi:10.1111/all.15214 3. Data on file. Ionis Pharmaceuticals. 4. 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 5. Smith TD, Riedl MA. The future of therapeutic options for hereditary angioedema. Ann Allergy Asthma Immunol. 2024;133(4):380-390. doi:10.1016/j.anai.2024.04.029 6. Riedl MA, Tachdjian R, Lumry WR, et al. Efficacy and safety of donidalorsen for hereditary angioedema. N Engl J Med. 2024;391(1):21-31. doi:10.1056/NEJMoa2402478 7. Haegarda. Prescribing information. CSL Behring. 8. Orladeyo. Prescribing information. BioCryst Pharmaceuticals Inc. 9. 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. doi:10.1016/j.jaip.2020.02.038