TREATMENT
LANDSCAPE:
CHALLENGES
STILL
LINGER
Still Having Attacks?
You’re Not Alone
Attacks Persist for Many People
While the goal that the US Hereditary Association (HAEA) treatment guidelines identify is to live without limitation from HAE,1 studies show that ~80% of people on preventive treatment still experienced an attack in the past year, and 34% reported monthly attacks. Frequent attacks can disrupt everyday life.1-3*†‡
What Are Common Treatment Challenges?
Many Preventive Treatments Are Stopped Within One Year
Analyzing health records of people with HAE on long-term preventive treatment revealed that ~43% of them stopped or switched their treatment within the first year.4§ Common reasons for stopping treatment included breakthrough attacks, treatment burden, side effects, and a search for better options.3-5‡§||
Many People Who Use On-Demand Treatment Don’t Carry It With Them
Many people taking on-demand treatment only don’t bring their medications when they leave home.6¶ This can leave them vulnerable because attacks can happen at any time without warning.
Most People Who Use On-Demand Treatment Prefer to Treat at Home
Most people surveyed said they only want to treat HAE attacks from their own homes.5§ In addition, almost half of people said they would rather make lifestyle modifications than carry on-demand medication while away from home.6¶
Many People Are Worried About Pain and Medication Storage
Treatments can help you prevent and manage attacks. Along with the unpredictability of attacks, some people reported concerns with treatment pain, storage, or travel.7,8†#
US HAEA Medical Advisory Board 2020 Guidelines.
2025 survey of 100 adults living with HAE.
2021 survey of physicians reporting data on 384 people living with HAE.
2025 health record analysis of 357 people age 12+ living with HAE.
2018-2019 chart review of 225 patients age 12+ living with HAE.
2022 survey of 107 people living with HAE.
2020 survey of 75 people living with HAE.
THINK ABOUT YOUR GOALS FOR TREATMENT, AND TALK ABOUT THEM WITH YOUR DOCTOR.
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References:
- 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
- Busse P, Wilson K, Farkas H, et al. Barriers to achieving normalization among people living with HAE on existing treatments. Presented at: American College of Allergy, Asthma and Immunology (ACAAI) 2025 Annual Scientific Meeting; November 6-10, 2025; Orlando, FL. ePoster R108.
- Anderson J, Soteres D, Tachdjian R, et al. Real-world outcomes in patients with hereditary angioedema prescribed lanadelumab versus other prophylaxis. Allergy Asthma Proc. 2024;45(6):426-433. doi:10.2500/aap.2024.45.240046
- Zuraw BL, Lopez-Gonzalez L, Manjelievskaia J, et al. Adherence and persistence among patients with hereditary angioedema receiving long-term prophylaxis in the United States. Allergy Asthma Proc. 2025;46(3):209-217. doi:10.2500/aap.2025.46.250029
- Mendivil J, DerSarkissian M, Banerji A, et al. A multicenter chart review of patient characteristics, treatment, and outcomes in hereditary angioedema: unmet need for more effective long-term prophylaxis. Allergy Asthma Clin Immunol. 2023;19(1):48. doi:10.1186/s13223-023-00795-2
- Lumry WR, Grumach AS, Betschel SD, et al. Management of hereditary angioedema attacks by patients on long-term prophylaxis versus on-demand therapy only. Allergy Asthma Proc. 2025;46(1):32-37. doi:10.2500/aap.2025.46.240096
- 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
- Radojicic C, Riedl MA, Craig TJ, et al. Patient perspectives on the treatment burden of injectable medication for hereditary angioedema. Allergy Asthma Proc. 2021;42(3):S4-S10. doi:10.2500/aap.2021.42.210025
This information is for educational purposes only and is not intended to constitute medical advice. For all healthcare decisions, talk with your healthcare team.