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Deflate-DTC

This content is not meant to replace a conversation with a healthcare provider. A healthcare provider can evaluate your symptoms and make the appropriate clinical decisions.

For healthcare professionals

For people with HAE and caregivers

The Trade-offs of HAE Treatments

Every current HAE medication forces patients to make choices between effectiveness, side effects, and convenience.

Trade-offs with HAE injections

Injections may be effective but can be hard to administer and carry around.

Fear of Needles

Having to inject yourself during an attack can increase anxiety

Travel Planning 

Injections can be difficult to carry, require more planning, and take up space

Family Planning

Treatment options should consider impact on personal choices in family planning 

Side Effects

In addition to systemic side effects that could lead people to stop therapy, injections may cause pain and/or a reaction at the injection site

Requires Training

Learning to give oneself an injection can take time and require training

Needle Fatigue

Some people may get tired of giving themselves injections and disposing of needles, which may lead them to
avoid treatment
[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

Currently available orals are convenient, but may not offer confidence.

Injection-Like Efficacy

On average, currently available orals may not provide injection-like efficacy

Side Effects

For prevention of attacks, currently available orals may have side effects that could lead people to stop therapy and risk the return of unpredictable and frequent attacks

I did try an oral, and the side effects made me feel miserable.

— Gabby, real person living with HAE

Trade-offs with HAE infusions

Injections may be effective but can be hard to administer and carry around.

Time Consuming

May require travel to an infusion center

Hard to Self-Administer

May be hard to find a vein or get IV to work, especially during an HAE attack

Conflicts with Plans

May interfere with personal plans and work obligations

Side Effects

May cause headaches, nausea, rash, and fever in addition to other side effects that could lead people to stop therapy

Need Assistance

Learning to give yourself an injection can take time and require training

Travel Issues

When away from home, hard to give oneself an IV

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 medication

Family Planning

Family planning decisions may be complicated by the realities of managing HAE.
I think there’s…just a lot of unknowns.

— Kevin, real person living with HAE

Trade-offs with HAE injections

Injections may be effective but can be hard to administer and carry around.

Fear of Needles

Having to inject yourself during an attack can increase anxiety

Travel Planning 

Injections can be difficult to carry, require more planning, and take up space

Side Effects

In addition to systemic side effects that could lead people to stop therapy, injections may cause pain and/or a reaction at the injection site

Requires Training

Learning to give oneself an injection can take time and require training

Needle Fatigue

Some people may get tired of giving themselves injections and disposing of needles, which may lead them to
avoid treatment
[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 infusions

Infusions can force you to schedule your whole life around your HAE attacks, and introduce tremendous burdens to patients and caregivers.

Time Consuming

May require travel to an infusion center

Hard to Self-Administer

May be hard to find a vein or get IV to work, especially during an HAE attack

Conflicts with Plans

May interfere with personal plans and
work obligations

Side Effects

May cause headaches, nausea, rash, and fever in addition to other side effects that could lead people to stop therapy

Need Assistance

May have to ask family or caregivers for
help with IV

Travel Issues

When away from home, hard to give oneself an IV

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

Trade-offs with HAE orals

Currently available orals are convenient, but may not offer confidence.

Injection-Like Efficacy

On average, currently available orals may not provide injection-like efficacy

Side Effects

For prevention of attacks, currently available orals may have side effects that could lead people to stop therapy and risk the return of unpredictable and frequent attacks
I did try an oral, and the side effects made me feel miserable.

— 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 medication

Family Planning

Family planning decisions may be complicated by the realities of managing HAE.
I think there’s…just a lot of unknowns.

— Kevin, real person living with HAE

HAE, hereditary angioedema; IV, intravenous infusion.

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