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Do you face challenges managing your HAE attacks?

Answer 5 questions to find out if your attack management journey compares to what others in the community have shared.

START

We partnered with the HAE community to find out:

The results revealed that sometimes people delay on-demand treatment or don't treat attacks because of:

Difficulty carrying icon

Difficulty carrying
their on-demand treatment wherever they go

Anxiety icon

Anxiety
of whether to treat when they recognize an attack

Fear of injection icon

Fear of injection
or pain of medication


Lack of privacy icon

Lack of privacy
required to administer medication and a preference to treat at home

The HAE Attack Journey survey included 107 people living with HAE

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 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
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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.
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People living with HAE will travel an average of 3.5 hours away from home without their on-demand treatment.
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Reasons why people living with HAE do not carry on-demand treatment
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44% of people living with HAE prefer to avoid attack triggers.
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94% of people living with HAE agreed that the signs and symptoms of the initial onset of an attack can be recognized.
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List of sensations and feelings people living with HAE describe that are linked to the onset of an attack
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Respondents reported on what they're feeling during the onset of an attack.
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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
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Bar graph showing reasons people living with HAE delay treatment.
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72% of people living with HAE said they did not take their on-demand treatment because they prefer to treat attacks at home.
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Bar graph showing the reported outcomes of early treatment
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3 out of 4 people living with HAE reported that when their on-demand treatment was delayed, their HAE attacks progressed in severity.
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8 out of 10 people living with HAE agreed the attack takes longer to resolve when they delay treatment.
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97% of people living with HAE agree that it's important to recover quickly from an attack.
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95% of people living with HAE experienced a decreased level of anxiety once they realized they were recovering from an attack.

Attack preparation

Share
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.
Share
People living with HAE will travel an average of 3.5 hours away from home without their on-demand treatment.
Share
Reasons why people living with HAE do not carry on-demand treatment
Share
44% of people living with HAE prefer to avoid attack triggers.

Attack recognition

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Statistic about people living with HAE calling the initial onset of an attack ‘signs and symptoms’
Share
List of sensations and feelings people living with HAE describe that are linked to the onset of an attack
Share
Respondents reported on what they're feeling during the onset of an attack.

Decision-making

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

Resolution

Share
Bar graph showing the reported outcomes of early treatment
Share
3 out of 4 people living with HAE reported that when their on-demand treatment was delayed, their HAE attacks progressed in severity.
Share
8 out of 10 people living with HAE agreed the attack takes longer to resolve when they delay treatment.
Share
97% of people living with HAE agree that it's important to recover quickly from an attack.
Share
95% of people living with HAE experienced a decreased level of anxiety once they realized they were recovering from an attack.

Do these results reflect your own experience?

Check out our resources to help you create an attack management plan that works for you.

See Resources
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