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HAE Management and Treatment

CE / CME

Expert Guidance on HAE Management and the Evolving Landscape of Prophylaxis

Physician Assistants/Physician Associates: 0.50 AAPA Category 1 CME credit

Nurse Practitioners/Nurses: 0.50 Nursing contact hour

Physicians: maximum of 0.50 AMA PRA Category 1 Credit™

Released: March 25, 2025

Expiration: March 24, 2026

Marc Riedl
Marc Riedl, MD, MS
CME/CE Information

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Shared Decision-making 3D Model in HAE Management

There are numerous treatment options for long-term prophylaxis in HAE, and I anticipate there will be more added to our toolbox in the coming years. With this, it is important to consider how best to use these treatments. Not just in HAE management, but in various areas of medicine now, the greater healthcare community is recognizing the value of shared decision-making. This figure illustrates how to implement shared decision-making in your practice.

First, HCPs need to discover by having discussions with patients about their condition, needs, goals, and personal life, including their work and family. In addition, HCPs must acknowledge that there are options and review these options with patients. They must listen to patients in an effort to understand their wants, needs, and preferences, all of which should be considered when making treatment decisions.

This is where expertise is critical. HCPs should be familiar with available alternatives, the risks and benefits of each option, and the current data to inform and educate patients. They must be able to discuss these and match the available treatment options with patients' goals and preferences, so an informed decision can be made.

And last, HCPs need to decide with patients. They need to make a decision based on all the above factors and implement the logistics of the treatment plan.

The cycle does not stop there. This is an iterative process. Although we may implement a treatment and hope that it works well for patients, we need to go back and start this process again at follow-up visits. Are we still meeting patients’ needs and goals? Is the medication working as expected? Are there any safety concerns? Are there logistical issues with patients continuing on a specific treatment plan?

HCPs should constantly go around this circle of discovering, discussing, and deciding to ultimately optimize the treatment plan for each patient. This can be done well in HAE management because we have a toolbox of treatment options for both on-demand treatment as well as short-term and long-term prophylactic therapy.27

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Rethinking HAE Management

With these emerging therapies and strategies in HAE, HCPs must rethink how they manage patients. Not only as we get new FDA-approved medicines, but how we are discussing these treatment options with our patients. Although it is important to talk about symptoms—attack frequency, type, severity, and related complications—good care needs to go beyond that. HCPs need to ask more probing and comprehensive questions to look globally at how patients are doing. This includes asking patients if they feel in control of their HAE.

Going back to the guidelines, they recommend treating HAE to ultimately control it so that patients are not suffering from attacks or symptoms. You can ask patients: Do you feel in control? Do you have concerns about your treatment plan or medications?

One of my personal favorites is asking patients what they are not doing or not doing well in their life because of HAE. This could relate to their work, school, or personal life, their ability to exercise, carry out certain hobbies, or travel, or with having children. Sometimes this question can also relate to their emotional state, considering the unpredictability of HAE attacks.

In all, open-ended questions allow patients to communicate their highest priorities, what they are most interested in pursuing, to us as HCPs. This then allows us to determine what can be changed about their treatment that might improve their quality of life.

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Key Takeaways

To wrap up, I covered several prophylactic options for HAE, but unmet needs persist, which is where investigational treatments like garadacimab and donidalorsen show promise. There are other therapies that are earlier in clinical development that may change the future of HAE management. With these, we may have an opportunity in the future to adjust treatment plans to significantly reduce HAE attacks, address disease burden, and improve patients’ quality of life. Being aware of the new treatments coming down the pipeline is critical so that we can incorporate them into treatment plans once approved and available.

It is important to discuss the available options with patients using shared decision-making, and HCPs should do their best to provide equal access to these therapies for all patients. This includes better serving underserved populations who may not be able to access some treatment options as easily as others, as well as thinking more globally and bringing therapies to everyone with HAE with the goal of optimizing patient care.

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A 17-year-old patient with HAE is starting long-term prophylaxis before moving to college. He prefers a regimen with infrequent dosing, high efficacy, and low risk of adverse events (AEs). Which of the following would  you recommend?

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