US HAEA Insurance Reimbursement Guidebooks

US HAEA Insurance Reimbursement Guidebooks

The US HAEA can help you understand and navigate the often difficult and stressful process for obtaining insurance approval for HAE medicines

Our Insurance Reimbursement Guidebooks have been designed to help the HAEA community understand insurance challenges and assist in appealing denials for access to HAE medicines. One guidebook is targeted to help people living with HAE, while the other is designed for healthcare professionals. The Guidebooks are the product of research conducted by the HAEA that included people with HAE, reimbursement specialists, and payers.

Download the Guidebooks by visiting and clicking on the Resources tab, or you can order a hard copy version by filling out the request form online. Feel free to also download or order a copy of the Healthcare Professionals version to share with your HAE treating physician!

Download the Guidebooks here!

We need all HAEA friends to participate in a research project designed to demonstrate the increased quality of life and economic value of HAE medicines

The US HAEA is sponsoring a unique, ground-breaking research study that seeks to accurately show how HAE affects overall quality of life. This research will help us:

The HAEA needs everyone in our community to participate in this special initiative to ensure this vital research effort is successful. The study involves taking a two-part survey along with an optional, but very important re-test. The total time commitment for this study is between 45 - 60 minutes. We recognize that your time is valuable, so we will send you a check for $75 after you complete both part one and part two of the online survey.

Keep in mind that your personal information is kept confidential and can never be connected to the answers you provide.

If you have any questions or would like additional information about the study, please reach out to Sherry Swanson or Sally Urbaniak at

Thank you for your continued support of research initiatives that will benefit the entire HAE Community!

Save the Date! 2021 HAEA Virtual Capitol Hill Campaign

Save the Date! 2021 HAEA Virtual Capitol Hill Campaign

Friday, October 15, 2021 - 1:00 PM ET

Every year, the HAEA organizes a large group of people with HAE and caregivers who visit over 50 strategically selected House and Senate offices. During these visits, HAEA friends share their personal stories about living with HAE to legislators, and explain the impact of public policy on our health and quality of life. These personal encounters allow legislators to understand the needs of the HAEA community and design policy that addresses our concerns.

While Covid-19 prevents us from holding in-person meetings in Washington DC, our 2021 HAEA Virtual Capitol Hill Campaign will allow us to actively engage with our elected officials and voice our support for the HAEA’s proposed legislation called “The Access to Marketplace Insurance Act,” as well as additional funding for research at NIH, which is vital for the continued advancement of new and enhanced therapies.

Please join us for the 2021 HAEA Virtual Capitol Hill Campaign on Friday, October 15th at 1:00 PM ET.

To register for the Virtual Capitol Hill Campaign, click here, or contact John Williamson at

October is HAE Youth Advocacy Month!

October is HAE Youth Advocacy Month!

During HAE Youth Advocacy Month, the HAEA will be sharing inspirational stories from young HAE advocates.

HAE Youth Advocacy Month provides a great opportunity for young people in the HAE community to take action for HAE and raise awareness in their own way.

Here are some things that you and your family can do to advocate and spread HAE awareness in October:

We encourage you to visit the Youth Activities page at to learn more about ways that you can make a lasting impact in the HAE community!

Mark your calendar - Insurance Open Enrollment Starts in October

Mark your calendar - Insurance Open Enrollment Starts in October

Open enrollment for insurance starts this month. We encourage you to take some time to carefully research and evaluate your options and ultimately choose a plan that meets your health, financial, and lifestyle needs. The HAEA Health Team is available to help you navigate this selection process.

Medicare recipients: The Medicare Advantage or Medicare Prescription Drug Plan open enrollment period will run from Friday, October 15th through Tuesday, December 7th. If you are not satisfied with your current Medicare Drug Plan and want to switch, this is the time to make the change.

ACA (Affordable Care Act):

Employer sponsored plans: Each employer sets their enrollment dates. It is important that you research and review the plans offered, and consult with your human resources department to ensure the plan you choose provides optimal coverage for your HAE medicines.

Please reach out to your HAEA Health Team for assistance in your insurance review, research, and selection process.

The HAEA Health Team is always here for you! Please reach out to us at (866) 798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) an HAE-related question.

This month, the HAEA is pleased to recognize dedicated Caregiver, Eliana!

This month, the HAEA is pleased to recognize dedicated Caregiver, Eliana!

“I want to nominate my sister, Eliana, for the Caring for Caregivers Program. She has gone above and beyond her duties as a caregiver when helping me with my HAE diagnosis. When I am having an attack, or having a hard time administering my medication, she puts her own concerns aside to make sure that I feel cared for and safe. I know that growing up with a sibling who has a chronic illness can be incredibly difficult, but she has never let me see her struggles and instead focuses on my care. I couldn’t ask for a better sister, caregiver, or best friend.” - Jess

Is there an outstanding caregiver or care team who helps you manage your HAE?

Recognize your caregiver today and we will send them a special gift and a kind note in November, National Caregivers Month, to let them know how much they are appreciated.

For more information, please contact HAE Advocate, Lisa Facciolla, at

Recognize your caregiver today here!

HAE Speaks Podcast

HAE Speaks Podcast

We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series presents the unique stories of individuals affected by HAE with the goal of connecting our community through shared experiences. We invite you to add HAE Speaks to your podcast playlist and listen on all major podcasting platforms!

Episode 18: Capitol Hill Campaign

In this episode, Christine and Mike discuss the US HAEA Virtual Capitol Hill Campaign and the importance of advocating for the HAE.

Do you have a topic, question, or idea you would like us to cover? Send your suggestions to Mike Mallory at

CLICK HERE to listen to Episode 18 of the Podcast!

#BeyondHAE Youth Podcast - October Episode

#BeyondHAE Youth Podcast - October Episode

The #BeyondHAE Youth Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Listen to stories from young people affected by HAE as they share the ways that they navigate life with HAE or support a diagnosed family member.

Moving away from home to go to college can be a big adjustment for everyone, however, it can be a particularly big move for someone with HAE. Tune in to this month's #BeyondHAE podcast to hear how Kobe adjusted to college life away from home. Part of his new responsibilities involved receiving, managing, and taking his medication while at college. This episode is one you won't want to miss if you're planning to move away from home or make a major life transition.

Listen to the Podcast here!

Clinical Trial Updates

Clinical Trial Updates

The US HAEA is currently assisting CSL Behring in recruiting people with HAE for the CSL 312 Garadacimab study, a worldwide clinical research study to investigate the safety and effectiveness of an investigational subcutaneous medication given once a month to prevent Hereditary Angioedema (HAE) attacks. There are currently 10 active sites in the US.

In this study, doctors will be evaluating Garadacimab, to assess its effectiveness at preventing HAE attacks by comparing it to placebo (inactive drug).

People diagnosed with HAE (at least 12 years of age with Type I or Type II) who participate in this study may receive either Garadacimab or placebo for six months. During that time, using on-demand medication to help with acute attacks will be permitted.

The HAEA is also supporting Takeda’s efforts in recruiting people with HAE with Normal C1-Inhibitor for their clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing individuals into clinics. There are now 14 clinical trial sites actively enrolling, including new sites in Tampa, FL, and Chicago, IL.

If you have HAE Type I, Type II, or HAE with Normal C1-Inhibitor and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at to see if there will be an active clinical trial site in your area.

HAEA Treatment Education Series Webinar

HAEA Treatment Education Series Webinar

Link Webinar:

Phone Number: +1 646 558 8656 (Webinar ID: 859 1681 5736)

Register here!

HAEA Virtual Meet & Greet Events

HAEA Virtual Meet & Greet Events

Network with other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to get to know others affected by HAE in your area. If you are interested in participating in an HAEA Virtual Meet & Greet, please check out the HAEA Events Calendar, or reach out to Mike Mallory at

What would you tell someone who is considering attending a future HAEA Meet & Greet?

“If someone was interested in attending a Meet & Greet I would suggest they make appropriate time, come with questions and one suggestion to share with the participants.” - Lenita D., Previous HAEA Meet and Greet Participant

Tuesday, October 19th, 6:30 PM CT


Register here!

Tuesday, November 16th, 6:30 ET


Register here!

Register today to receive a FREE HAEA swag bag after the event!

For more information, please contact Mike Mallory at or (513) 858-9370.

The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community’s quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral, and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies. Copyright © (2021) US Hereditary Angioedema Association All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means, mechanical, electronic, photocopying, recording, or otherwise without the prior written permission of the US Hereditary Angioedema Association. For information, send an email to