How does your attack journey experience compare?

Answer 5 questions to see if your experience is similar to those in the HAE Attack Journey Survey.

How do people living with HAE prepare for and treat attacks?

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 people living with HAE delay on-demand treatment or decide not to treat an HAE attack. The HAE Attack Journey Survey has revealed that many people living with HAE find it difficult to carry their on-demand treatment and struggle with the anxiety of whether to treat when they recognize an attack. 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.

The HAE Attack Journey survey included 107 people living with HAE

54/107

treat with
prophylaxis

53/107

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

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.

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.

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

Prophylaxis vs on-demand–treatment HAE Attack Journey survey data

*For Firazyr, 44 people were on prophylaxis and on-demand, and 40 were taking on-demand only; for Ruconest, 3 people were on prophylaxis and on-demand, and 10 were taking on-demand only; for Berinert, 6 people were on prophylaxis and on-demand, and 3 were taking on-demand only; for Kalbitor, 1 person was on prophylaxis and on-demand, and 0 were taking on-demand only. 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 prophylaxis
2
Go through a complex on-demand,
decision-making process that
results in delayed treatment
3
Have prolonged attacks and longer
recovery, resulting in significant
physical and psychological burden

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

Decision-making:

DESPITE RECOGNIZING THE START OF AN HAE ATTACK, NEARLY ALL RESPONDENTS DELAY
ON-DEMAND TREATMENT

RESOLUTION:

DELAYING ON-DEMAND TREATMENT IMPACTED ATTACK SEVERITY AND RECOVERY TIME

Attack preparation
Attack recognition
Decision-making
Resolution

2 out of 3 people living with HAE say they don't always carry their on-demand treatment with them and will travel more than 3 hours from home.

People living with HAE will travel an average of 3.5 hours away from home without their on-demand treatment.

Reasons why people living with HAE do not carry on-demand treatment

44% of people living with HAE prefer to avoid attack triggers.

List of sensations and feelings people living with HAE describe that are linked to the onset of an attack

Respondents reported on what they're feeling during the onset of an attack.

At first recognition of an attack, 86% of people living with HAE reported delaying injectable on-demand treatment for an average of 2.4 hours

Bar graph showing reasons people living with HAE delay treatment.

72% of people living with HAE said they did not take their on-demand treatment because they prefer to treat attacks at home.

Bar graph showing the reported outcomes of early treatment

3 out of 4 people living with HAE reported that when their on-demand treatment was delayed, their HAE attacks progressed in severity.

8 out of 10 people living with HAE agreed the attack takes longer to resolve when they delay treatment.

97% of people living with HAE agree that it's important to recover quickly from an attack.

95% of people living with HAE experienced a decreased level of anxiety once they realized they were recovering from an attack.

Attack preparation

Attack recognition

Decision-making

Resolution

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. 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. 3. 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. 4. Burnette A, Anderson J, Longhurst H, et al. Anxiety associated with parenteral on-demand treatment for hereditary angioedema (HAE). J Allergy Clin Immunol. 2023;151(2):AB141. doi:10.1016/j.jaci.2022.12.441 5. Data on File. KalVista Pharmaceuticals, Inc. 2023.