HAE Attack Journey | Connect. Learn. Act.

Key findings from the HAE Attack Journey Survey

The HAE Attack Journey Survey

The HAE Attack Journey surveyed people living with HAE with the goal of understanding:

How people living with HAE plan for an attack and make decisions about treatment
How attacks impact quality of life

There are times when patients delay on-demand treatment or decide not to treat an HAE attack.^1,2 The HAE Attack Journey Survey has revealed that many people living with HAE find it difficult to carry their on-demand treatment and face challenging decisions while considering whether to treat when they recognize an attack.^2,3 Lack of privacy required to administer medication, preferring to treat at home, and fear of injection or pain of medication are 3 of the most common reasons for delaying treatment.^2,3

The HAE Attack Journey survey included 107 people living with HAE

54/107

treat with
prophylaxis⁴

53/107

treat with
on-demand
only⁴
21 male and
86 female
participants⁴
56 people who were
<40 years old
and 51 who were
≥40 years old⁴

Learn more about this survey

The HAE Attack Journey Survey was conducted by KalVista Pharmaceuticals in partnership with the HAE community to better understand how people living with HAE plan for an attack, make decisions about on-demand treatment, and how attacks impact their quality of life. This survey was based on the findings of an earlier pilot survey (N=32), which revealed that the majority of people living with HAE continue to experience a prolonged attack journey, despite advances in treatment.⁴

The survey was conducted online from April to October 2022 and asked 107 members of the Hereditary Angioedema Association questions about HAE attacks and their current on-demand treatment experience.⁴

THERE WERE 54 PEOPLE ON PROPHYLAXIS AND 53 TAKING ON-DEMAND ONLY⁴

Infographic of the prophylaxis treatment breakdown for people in the HAE Attack Journey survey.

*For Firazyr, 44 patients were on prophylaxis and on-demand, and 40 were taking on-demand only; for Ruconest, 3 patients were on prophylaxis and on-demand, and 10 were taking on-demand only; for Berinert, 6 patients were on prophylaxis and on-demand, and 3 were taking on-demand only; for Kalbitor, 1 patient was on prophylaxis and on-demand, and 0 were taking on-demand only.⁴ Cinryze, Firazyr, Kalbitor, and Takhzyro are registered trademarks of Takeda or its affiliates. Berinert and Haegarda are registered trademarks of CSL Behring GmbH. Orladeyo is a registered trademark of BioCryst Pharmaceuticals, Inc. Ruconest is a registered trademark of Pharming Intellectual Property, B.V.

The HAE Attack Journey Survey showed that people living with HAE:

1
Continue to have attacks even
if they’re taking prophylaxis⁴
2
Go through a complex on-demand,
decision-making process that
results in delayed treatment⁴
3
Have prolonged attacks and longer
recovery, resulting in significant
physical and psychological burden⁴

CLOSE SURVEY DETAILS

Review the HAE Attack Journey Survey results

Attack preparation:

People living with HAE miss opportunities to treat attacks early

Attack recognition:

People living with HAE can consistently recognize the onset of their attacks

Attack recognition:

People living with HAE can consistently recognize the onset of their attacks

Decision-making:

DESPITE RECOGNIZING THE START OF AN HAE ATTACK, MOST STILL DELAY ON-DEMAND TREATMENT

Resolution:

DELAYING ON-DEMAND TREATMENT IMPACTED ATTACK SEVERITY AND RECOVERY TIME

Attack preparation
Attack recognition
Decision-making
Resolution

Statistic about how few people carry on-demand HAE treatment away from home, highlighting how many miss the opportunity to treat early

Statistic about how far people travel from home without on-demand HAE treatment, highlighting an average of 3.5 hours away from home.

Statistic about the reasons people living with HAE don’t carry on-demand treatment.

Statistic about people living with HAE avoiding attack triggers, highlighting that 44% prefer to avoid attack triggers.

Infographic about how people living with HAE describe the feeling of attack onset.

Infographic about what people living with HAE feel during the onset of an attack.

Statistic about people living with HAE delaying injectable on-demand treatment at first recognition of an attack.

Statistic about the reasons people living with HAE delay on-demand treatment.

Statistic about preference in people living with HAE to treat at home, highlighting that this could cause delays in treatment.

Statistic about people living with HAE recognizing benefits of early on-demand treatment for HAE attack.

Number of people reporting that delayed treatment leads to more severe HAE attacks

Statistic about people living with HAE agreeing attacks take longer to resolve when delaying on-demand treatment.

Statistic about recovery time from an HAE attack being important to people living with HAE.

Statistic about decreased level of anxiety for people living with HAE once they realize they were recovering from and HAE attack.

Attack preparation

Attack recognition

Decision-making

Resolution

Click below for additional presentations, published data, and insights from the survey.

HAE ATTACK JOURNEY
PUBLICATIONS

References: 1. Valerieva A, van Kooten S, Heckmann M, Danese S, Goga L, Longhurst H. Patients delay treating hereditary angioedema (HAE) attacks with currently available, injectable, on-demand therapies. Abstract presented at: EAACI 2023 Hybrid Congress, June 9-11, 2023; Hamburg, Germany. Allergy. In Press. 2. Grumach A, van Kooten S, Heckmann M, Danese S, Goga L, Garcez T. Understanding the complex decision-making associated with on-demand treatment of hereditary angioedema (HAE) attacks. Abstract presented at: EAACI 2023 Hybrid Congress, June 9-11, 2023; Hamburg, Germany. Allergy. In Press. 3. Betschel S, van Kooten S, Heckmann M, Danese S, Goga L, Guilarte M. HAE Patients Decision to Carry On-demand Treatment When Away from Home. Abstract presented at: 13th C1-inhibitor Deficiency & Angioedema Workshop, May 4-7, 2023; Budapest, Hungary. Allergy Asthma Clin Immunol. In Press. 4. Data on File. KalVista Pharmaceuticals, Inc. 2023. 5. Betschel S, van Kooten S, Heckmann M, Danese S, Goga L, Guilarte M. Remaining burden of hereditary angioedema (HAE) attacks despite modern long-term prophylaxis. Abstract presented at: EAACI 2023 Hybrid Congress, June 9-11, 2023; Hamburg, Germany. Allergy. In Press.