Allergy and immunology specialist, Dr. Cristine Radojicic, shares the importance of long-term prophylaxis to minimize the burden of Hereditary Angioedema (HAE). Learn about treatment goals and how you can actively participate in making treatment decisions with your doctor through shared decision-making.
If you have a Hereditary Angioedema (HAE) diagnosis or are caring for someone with HAE, then you understand its impact on daily activities and interference with family life. As an allergy and immunology specialist, I’ve supported many patients throughout their HAE journey. From the fear of an attack to the challenges of treatment, I am aware of the multifaceted burden of this condition.
The uncertainty of HAE can weigh heavily on your mind, leaving you feeling anxious about the next attack. It’s not just the physical symptoms but it’s the disruptions in daily life, emotional toll, and even lifestyle changes to avoid triggers. You are not alone. Studies of patients with HAE demonstrate the profound impact of HAE attacks.
I would like to share a story of a patient with HAE who had her first attack at 2 years old. Growing up, the thought of an attack was always on her mind. Simple tasks, like typing on a keyboard, holding a pen, or stirring a pot while cooking, could trigger an attack. Coping with these attacks often meant making lifestyle changes to avoid triggers. However, a life-threatening attack that blocked her airways led to hospitalization and eventual diagnosis of HAE. After a visit with a specialist, she started long-term prophylaxis to help prevent HAE attacks. This has allowed her to be more independent, given her more confidence, and empowered her to pursue her goals without the burden and uncertainty of attacks.
If you need support or guidance, feel free to reach out to an HAE Advocate at (866) 798-5598.
The impact of HAE highlights the continued need for additional, effective long-term prophylactic treatments. Your healthcare provider may have discussed with you that HAE is managed with both long term prophylaxis and on-demand treatment. Long-term prophylaxis is the regular use of medication that reduces the burden of disease by preventing attacks and on-demand treatment is available in the event of an attack. When I treat patients, I aim for the treatment goals outlined by WAO/EAACI, which prioritize leading a normal life and gaining total control of HAE.
These goals can be achieved with long-term prophylaxis, which can decrease unexpected attacks and reduce the burden of the disease. Long-term prophylaxis should be individualized, taking into account disease activity, disease and treatment burden, impact on quality of life, and response to your current management plan with on-demand and prophylactic therapy.
You have the power to gain control of HAE and minimize its burden. As a physician, I prioritize efficacy, safety, and convenience when choosing an HAE treatment. Factors that are important to you as a patient may include dosing frequency, ease of use, how fast it works, discomfort during administration, and sustained efficacy between attacks. Whether you are starting your HAE treatment journey or considering a switch, it’s important to voice your concerns with your healthcare provider. Your healthcare provider understands the challenges you're facing and wants to find an optimal management plan that fits your preferences and needs. Switching to a new prophylactic therapy is common if your current treatment isn't effectively controlling your attacks, or if the medication doesn’t fit into your lifestyle anymore.
When it is time to start long-term prophylaxis or switch therapy, shared decision-making empowers you to personalize your treatment. This collaborative process involves discussing your needs, goals, and the pros and cons of each treatment option with your healthcare provider. Shared decision-making is an ongoing process in which treatment decisions are updated based on your changing needs and response to therapy. The 3 steps involved in shared decision-making are: Discover, Discuss, and Decide. The US HAEA created an HAE shared decision-making tool, including a personalized summary that you can easily download.
Available HERE.
When assessing treatment options, consider what's on the horizon in long-term prophylaxis by discussing factor XIIa with your healthcare provider. Within the HAE pathway, factor XII is the first protein activated. The activated form, factor XIIa, increases the production of bradykinin, which causes swelling seen in someone experiencing an HAE attack. Learn more about targeting the top of the pathway
HERE.
EAACI, European Academy of Allergy and Clinical Immunology; factor XIIa, activated factor XII; WAO, World Allergy Organization. †Advocates are not healthcare providers or medical experts and are compensated for their participation. For medical questions, you should contact your physician.
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The US HAEA is product and company neutral and does not endorse or recommend HAE medicines.
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