THE BIGGER PICTURE
REVEALS
HIDDEN LIFELONG
PATIENT
BURDENS
At first glance, the picture of hereditary angioedema (HAE) burden is simple: attacks result in physical impacts. But as you look at the bigger picture, additional details start to emerge, resulting in a complex web of mental, logistical, and professional challenges.
HAE Management May Feel Like a Never-Ending Job
Ninety Percent of Respondents Said Access Was a Major Stress
Insurance delays and denials were a major source of anxiety for 90% of respondents.1*
Medication Storage and Travel Were Concerns for 56% of Respondents
More than half of patients (56%) said the need to always keep HAE medication with them was frustrating.2†
Logistics Such as Coordinating Care Were Challenges for 57% of Respondents
More than half of patients (57%) said logistics such as coordinating insurance for their HAE treatment were major concerns.2†
Insurance Problems Led to More Frequent Attacks for 70% of Respondents
Due to treatment gaps caused by insurance delays and denials, 70% of respondents reported more frequent attacks.1*
HAE May Be Impacting Your Patients’ Careers
69% said HAE impacted their career choices.3‡
When asked about careers, most respondents said HAE has kept them from considering certain jobs.3‡
28% said they have turned down a job.2†
A significant number of respondents said they have turned down job opportunities to avoid additional stress that may trigger HAE attacks.2†
QUESTIONS ABOUT THE TRADE-OFFS PATIENTS HAVE MADE CAN HELP INFORM TREATMENT PLANS.
Connected Burdens Can Magnify Stress
Patients living with HAE don’t experience these burdens independently; often, burdens combine to impact several areas of life. For instance, in a 2025 survey, the logistical challenges of insurance access met the professional challenges of career advancement:
Eighty percent of respondents on long-term prophylaxis said they are afraid to change jobs because they believe insurance changes could limit their access to treatment.2†
The Result of These Challenges? A Constant Reminder
All of these challenges and burdens combine to create a constant mental reminder of HAE. In a 2025 HAE survey, 33% of respondents said they think about HAE every day, and 61% reported thinking of it weekly.2† This suggests a significant mental toll.
2022 survey of 20 adults living with HAE.
2025 survey of 100 adults living with HAE.
2007 survey of 457 patients living with HAE.
The Lifelong Condition
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Reframing Patient Perspectives
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References:
- Arora NS, Nelson B, Carpenter L, et al. Consequences of insurance coverage delays and denials for patients with hereditary angioedema. J Allergy Clin Immunol Pract. 2023;11(8):2432-2438.e1. doi:10.1016/j.jaip.2023.03.006
- Busse P, Wilson K, Farkas H, et al. Rethinking the management of hereditary angioedema. Allergy Asthma Proc. 2026;47(2):92-101. doi:10.2500/aap.2026.47.260004
- Lumry WR, Castaldo AJ, Vernon MK, et al. The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc. 2010;31(5):407. doi:10.2500/aap.2010.31.3394