Dear Future Me Letter example: HAE attack management

HEREDITARY ANGIOEDEMA (HAE) IS A RARE CONDITION THAT CAUSES SWELLING

HAE attacks are unique to every person, but occur as swelling in different parts of the body, including hands, feet, genitals, stomach, and face. In serious cases, swelling in the airway can make it difficult to breathe and require emergency intervention.

Attacks are sometimes triggered by emotional stress or physical trauma, but swelling often occurs without a known trigger. Even if someone is taking prophylaxis (preventative) treatment, they may still experience attacks. Those living with HAE face significant levels of anxiety which impacts their quality of life.

EVERY ATTACK SHOULD BE CONSIDERED FOR TREATMENT

When a person living with HAE recognizes they are having an attack, it is important to treat as soon as possible with on-demand treatment (also called rescue or acute treatment).

On-demand treatment stops attacks from continuing but does not reverse swelling that has already occurred.

These treatments work by stopping the attack from continuing from the time of treatment onward, but do not reverse the swelling that has already occurred. Waiting to treat until later in the attack means your body will still have to clear the fluid that has built up, and it will take time to get back to normal.

Some people say they treat attacks in some locations but not others, but it is impossible to know how and where an attack will progress. That's why guidelines RECOMMEND PEOPLE CONSIDER TREATING EVERY ATTACK as early as possible.

HAE Guidelines advise 4 key pillars of treatment, which includes the strong recommendation that on-demand medication is considered for every attack

VIEW GUIDELINES

1
Keep on-demand treatment available at all times. Every person living with HAE should consistently have sufficient on-demand treatment for at least 2 attacks and carry on-demand medication at all times, even if they're taking prophylaxis.
2
Treat early to stop attacks from getting worse. On-demand medication should be considered for every attack and taken at attack onset.
3
Treat regardless of location and intensity. ALL HAE attacks are eligible for treatment, regardless of where the swelling occurs or how minor the attacks may seem at onset.
4
Have a personalized action plan in place. A treatment plan should be carefully developed based on your needs and through a shared decision-making process with your doctor.

WHEN YOU RECOGNIZE THE ONSET OF AN ATTACK, FOLLOW TREATMENT GUIDELINES AND
TREAT EARLY TO STOP ATTACKS FROM GETTING WORSE.

For many people, the decision to use on-demand treatment
can be complex and lead to mental gymnastics

People living with HAE say there are many factors that can lead to delayed treatment.
Some of these include:

Factors that can lead to delayed treatment for hereditary angioedema (HAE) attacks

PEOPLE TAKING PROPHYLAXIS STILL MAKE COMPROMISES IN THEIR DAILY LIVES TO AVOID OR COPE WITH HAE ATTACKS.

The goal of treatment is to minimize compromises in lifestyle, but attacks still cause anxiety and impact quality of life

Anxiety and depression are common in people living with HAE, often due to fear of the next attack, a painful attack, or on-demand treatment itself
Even people taking prophylaxis continue to experience HAE attacks
Attacks can significantly disrupt daily activities, causing people to restrict or modify their lifestyle to avoid them
People living with HAE prefer to treat at home to avoid treating attacks in public
People try to "save" doses and endure painful attacks without treatment

Start a conversation with your doctor.

Download a guide to help you discuss the challenges you may be facing and to co-decide on a plan to help you treat attacks earlier.

VIEW THE GUIDE

References: 1. US Hereditary Angioedema Association. What is Hereditary Angioedema (HAE)? Accessed July 25, 2023. https://www.haea.org/pages/p/what_is_hae 2. 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. 3. Savarese L, Mormile I, Bova M, et al. Psychology and hereditary angioedema: A systematic review. Allergy Asthma Proc. 2021;42(1):e1-e7. doi:10.2500/aap.2021.42.200073 4. Maurer M, Magerl M, Betschel S, et al. The international WAO/EAACI guideline for the management of hereditary angioedema—The 2021 revision and update. Allergy. 2022;77:1961-1990. doi:10.1111/all.15214 5. Busse P, Christiansen SC, Riedl MA, et al. US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema. J Allergy Clin Immunol Pract. 2021;1:132-150.e3. doi:10.1016/j.jaip.2020.08.046 6. Center for Biologics Evaluation and Research, U.S. Food and Drug Administration. The Voice of the Patient: Hereditary Angioedema. Public Meeting: September 25, 2017. Report Date: May 2018. 7. 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. 8. 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. 9. Mendivil J, Murphy R, de la Cruz M, et al. Clinical characteristics and burden of illness in patients with hereditary angioedema: findings from a multinational patient survey. Orphanet J Rare Dis. 2021;16:94. doi:10.1186/s13023-021-01717-4 10. Lumry W. Castaldo AJ, Vernon MK, Blaustein MB, Wilson DA, Horn PT. The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc. 2010;31:407-414. doi:10.2500/aap.2010.31.3394 11. Data on File. KalVista Pharmaceuticals, Inc. 2023. 12. Banerji A, Davis KH, Brown TM, et al. Patient-reported burden of hereditary angioedema: findings from a patient survey in the United States. Ann Allergy Asthma Immunol. 2020;124:600-607. doi:10.1016/j.anai.2020.02.018

HEREDITARY ANGIOEDEMA (HAE) IS A RARE CONDITION THAT CAUSES SWELLING

EVERY ATTACK SHOULD BE CONSIDERED FOR TREATMENT

EVERY ATTACK SHOULD BE CONSIDERED FOR TREATMENT

HAE Guidelines advise 4 key pillars of treatment, which includes the strong recommendation that on-demand medication is considered for every attack

For many people, the decision to use on-demand treatment can be complex and lead to mental gymnastics

The goal of treatment is to minimize compromises in lifestyle, but attacks still cause anxiety and impact quality of life

For many people, the decision to use on-demand treatment
can be complex and lead to mental gymnastics