Are Patients Managing HAE-C1-INH or Living Around It?
If patients still plan their lives around attacks, treatment burden may still be driving behavior.
Trade-offs with HAE injections
Effective, but can be hard to administer
and carry around.
Fear of Needles
Having to inject yourself during an attack can increase anxiety1
Side Effects
May cause pain and/or a reaction at the injection site1
Needle Fatigue
Long-term injectable regimens may be associated with diminished treatment adherence3
Requires Training
Self-injection requires patient education and proper technique to ensure efficacy1
Travel Planning
Injections can be difficult to carry, require more planning, and take up space4
[An] injection makes you feel like you’re sick, and people see you more sick when you have injections around.
— Andjela, real person liviang with HAE
Trade-offs with HAE orals
Convenient, but may not offer confidence.
Injection-like Efficacy
On average, currently available orals may not provide injection-like efficacy5
Multiple Doses
On-demand treatment may require multiple doses to fully resolve an HAE attack6
My doctor suggested an oral preventative medication that didn’t work out for me, and the side effects made me feel miserable.
— Gabby, real person living with HAE
Trade-offs with HAE infusions
Can force patients to schedule their whole life around their HAE attacks and introduce tremendous burdens to patients and caregivers.
Time Consuming
Often require administration in a healthcare setting, delaying time to treatment1
Side Effects
May cause headaches, nausea, rash, and fever7
Travel Issues
Equipment and storage needs can complicate treatment outside the home1
Hard to Self-Administer
Patients may have poor venous access and difficulty with administration1
May Need Others to Help
May require caregiver or professional support, limiting independence1
Conflicts with Plans
May interfere with personal plans and work obligations1
I sometimes struggle with finding my veins, or blowing veins, or even when I’m having hand swells. Hand swells make it difficult to start your IV.
— Gabby, real person living with HAE
Potential future trade-offs
Living with HAE can mean considering options about the future.
Gene Editing
Gene editing is considered to be permanent, and will not remove the need for rescue medication7,8
Family Planning
Family planning decisions may be complicated by the realities of managing HAE.2
I think there’s…just a lot of unknowns.
— Kevin, real person living with HAE
Trade-offs with HAE injections
Effective, but can be hard to administer and carry around.
Fear of Needles
Needle phobia is common and may lead to delayed or avoided treatment1
Side Effects
May cause pain and/or a reaction at the injection site1
Requires Training
Self-injection requires patient education and proper technique to ensure efficacy1
Needle Fatigue
Long-term injectable regimens may be associated with diminished treatment adherence3
Travel Planning
Injections can be difficult to carry, require more planning, and take up space4
[An] injection makes you feel like you’re sick, and people see you more sick when you have injections around.
—Andjela, real person living with HAE
Trade-offs with HAE orals
Convenient, but may not offer confidence.
Injection-like Efficacy
On average, currently available orals may not provide injection-like efficacy5
Multiple Doses
On-demand treatment may require multiple doses to fully resolve an HAE attack6
My doctor suggested an oral preventative medication that didn’t work out for me, and the side effects made me feel miserable.
—Gabby, real person living with HAE
Trade-offs with HAE infusions
Can force patients to schedule their whole life around their HAE attacks and introduce tremendous burdens to patients and caregivers.
Time Consuming
Often require administration in a healthcare setting, delaying time to treatment1
Hard to Self-Administer
Patients may have poor venous access and difficulty with administration1
Side Effects
May cause headaches, nausea, rash,
and fever7
May Need Others to Help
May require caregiver or professional support, limiting independence1
Travel Issues
Equipment and storage needs can complicate treatment outside the home1
Conflicts with Plans
May interfere with personal plans and
work obligations1
I sometimes struggle with finding my veins, or blowing veins, or even when I’m having hand swells. Hand swells make it difficult to start your IV.
—Gabby, real person living with HAE
Potential future trade-offs
Living with HAE can mean considering options about the future.
Gene Editing
Gene editing is considered to be permanent, and will not remove the need for rescue medication7,8
Family Planning
Family planning decisions may be complicated by the realities of managing HAE.2
I think there’s…just a lot of unknowns.
– Kevin, real person living with HAE
HAE, hereditary angioedema.
See what to expect from the future of HAE management.
Join us in finding a path beyond the burdens of HAE.
REFERENCES
1. 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
2. Hsu FI, Lumry W, Riedl M, Tachdjian R. Considerations in the management of hereditary angioedema due to C1-INH deficiency in women of childbearing age. Allergy Asthma Clin Immunol. 2022;18(1)64. doi:10.1186/s13223-022-00689-9
3. Betschel SD, Caballero T, Jones DH, et al. The complexities of decision-making associated with on-demand treatment of hereditary angioedema (HAE) attacks. Allergy Asthma Clin Immunol. 2024;20(1)43. doi:10.1186/s13223-024-00903-w
4. Soteres DF, Grimes F. Patient and caregiver perspectives on transitioning to oral prophylaxis in the emerging hereditary angioedema treatment landscape. Clin Case Rep. 2021;9(11):e05086. doi:10.1002/ccr3.5086
5. Riedl MA, Farkas H, Aygören-Pürsün E, et al. Oral sebetralstat for on-demand treatment of hereditary angioedema attacks. N Engl J Med. 2024;391(1):32-43. doi:10.1056/NEJMoa2314192
6. Cinryze Prescribing Information.
7. Longhurst HJ, Lindsay K, Petersen RS, et al. CRISPR-Cas9 in vivo gene editing of KLKB1 for hereditary angioedema. N Engl J Med. 2024;390(5):432-441. doi:10.1056/NEJMoa2309149
8. Cohn DM, Gurugama P, Longhurst HJ, et al. Lonvoguran ziclumeran—in vivo CRISPR gene editing in hereditary angioedema. N Engl J Med. 2026. doi:10.1056/NEJMoa2600931