Be Prepared to Choose an Optimal Insurance Plan: Open Enrollment Season Is Upon Us

It is that time of year again, insurance open enrollment season. It is important for everyone to take time and evaluate your current insurance plan to ensure that it continues to meet your healthcare needs, including coverage of your HAE medications.

Important Open Enrollment Information:

Medicare Open Enrollment October 15th - December - 7th
www.medicare.gov
There are several significant changes to Medicare that will be effective on January 1, 2025. Foremost among them is the Medicare Part D out-of-pocket maximum, which will capped at $2000.00 per year. Medicare Part D enrollees will also have the option to pay out-of-pocket prescription drug costs in the form of monthly payments instead of a large singular payment under the Medicare Prescription Payment Plan. This will be helpful for people with Medicare Part D who have high-cost sharing earlier in the plan year by spreading out those expenses over the year. To use the Medicare Prescription Payment Plan, you must opt into this program and can opt-out anytime if you meet your deductible.

There are a variety of plans to choose from, so it is important to do some research and determine which plans meet your needs.

On Medicare or Soon to Be Eligible? Explore the HAEA Academy Medicare Basics Course

Looking to expand your knowledge of Medicare? Dive into the HAE Academy's FREE online course that offers a clear introduction to Medicare including descriptions of its key components – Parts A, B, C, and D. Learn about eligibility, the enrollment process, and valuable resources designed to help individuals with HAE make informed Medicare-related healthcare decisions.

Take the FREE course today by clicking HERE!

Affordable Care Act (ACA) Open Enrollment November 1st - December 15th
www.healthcare.gov
Many ACA insurance plans cover HAE medications, making them a good option to consider if you are changing your insurance coverage.

Employer Healthcare Plans - Check with your employer for specific enrollment dates and plan options, including medication coverage.

Financial Assistance If you are receiving financial assistance from one of the foundations like The Assistance Fund (TAF) or Accessia Health, it is important that you also check with the programs to verify deadlines for 2025 financial assistance.

The Assistance Fund https://tafcares.org/
Accesia Health https://accessiahealth.org/

Focusing on Charitable Assistance: An Interview with Accessia Health and The Assistance Fund - https://vimeo.com/930309489?share=copy#t=0

During this informative session, representatives from Accessia Health and The Assistance Fund provide insights into how these programs can offer financial support for various medical expenses related to HAE management.

The HAEA Health team is here to help you as you navigate the sometimes confusing insurance open enrollment season. Please contact us via email at health@haea.org or call us at 866-798-5598

---

Inspiring the Next Generation of HAEA Leaders: Donate to the #Families4HAE Fundraiser

As the year comes to a close, we invite you to make a lasting impact on the lives of young people affected by HAE by contributing to the #Families4HAE end-of-year fundraiser. The HAEA youth programs provide affected children, young adults, and their families with the resources, support, and opportunities they need to thrive.

Make A Contribution Today

Why Your Donation Matters

Every contribution will go directly towards initiatives that empower, inspire, and educate the next generation of HAE leaders. Here's how your donation can make a difference:

• Vital Tools and Resources: Help young people with HAE understand and manage their condition effectively.
• HAEA Scholarship Programs: Provide financial assistance through the HAEA Scholarship programs, empowering students with HAE to pursue higher education and achieve academic success.
• Community and Advocacy: Support programs, events, and advocacy training workshops that offer young people with HAE the opportunity to interact, learn, and form enduring friendships with peers who understand their journey.

Your continued support will ensure that both current and future generations benefit from the HAEA's youth programs. Your generosity makes a profound difference, offering hope, support, and opportunities for a brighter future.

Build a Brighter Tomorrow for HAEA Youth

“Being a part of the HAEA Youth community has been an amazing experience for my family and me. Until we attended our first HAEA event, we had never met another person with HAE. Being around others who understand the challenges and hardships we face as rare disease patients has been very helpful, and meeting others who understand the hardships has made life seem less difficult.” - Kiarra

Join us in making a difference!

Donate Now to support the future of HAEA youth!

---

Empower Your Future: Apply for the 2025 HAEA Internship Program!

Are you between the ages of 17 and 25 and looking for a unique opportunity to build your professional skills while contributing to a cause that makes a difference? The HAEA Social Media Internship Program is an exciting way to gain real-world experience in social media, digital advocacy, and community engagement—all while supporting those impacted by HAE.

This five-month program offers hands-on training in social media strategy, content creation, and digital marketing, guided by mentors at the HAEA. You’ll work alongside a highly-effective team that creates impactful content and campaigns to help spread awareness about HAE.

This internship is more than just a role—it’s a chance to create change, build your resume, and grow both personally and professionally. Don’t miss out on this opportunity to be part of something impactful!

Ready to make a difference? Apply now to join the 2025 HAEA Social Media Internship Program!

---

HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Preparing for a Smooth Holiday Season: Focus on Stress-Free Planning and Self-Care Tips Through the HAEA CARE Groups

Holidays can be a lot of fun with family and friends although they can be stressful at times as well. The preparation and planning for holiday gatherings can create unplanned stress, so it is important to take time for yourself and take breaks when you feel yourself starting to feel overwhelmed. Making a list of things that need to be done and sticking to it can help you manage your time without feeling too overwhelmed.

Make sure you communicate with your specialty pharmacy early to ensure that you have a sufficient supply of HAE medication on hand for the holiday season.

Wanting to connect with others? Upcoming HAEA CARE Groups

November topic: Practicing Gratitude for Your Self-Care.
Dates:

• Thursday, November 14, 2024 - 11:00 AM ET / 8:00 AM PT
• Tuesday, November 19, 2024 - 10:00 PM ET / 7:00 PM PT

December topic: End of Year Reflection - How has Your Self-Care Improved?
Dates:

• Wednesday, December 4, 2024 - 7:30 PM ET / 4:30 PM PT
• Thursday, December 12, 2024 - 11:00 AM ET / 8:00 AM PT
• Tuesday, December 17, 2024 - 10:00 PM ET / 7:00 PM PT

Interested in joining one of these monthly support groups? Contact the HAEA Health Team for more information by calling 866-798-5598 or emailing an advocate at health@haea.org.

---

Increase Mindfulness of Your Self-Care: Connect with Others at the HAEA’s Fun-Packed Virtual Self-Care Bingo Night

Date: Tuesday, December 3rd, 2024
Time: 7:30 PM - 8:30 PM ET
Take an hour to check in with yourself and explore different self-care practices that can easily be incorporated into your routine at the HAEA’s Virtual Self-Care Bingo Night. It’s a great way to connect with the HAEA community while focusing on your own well-being!

We hope you can join us for an evening of fun, reflection, and self-care inspiration. Let’s take a moment to invest in ourselves—we deserve it!

Register HERE!

For more information, please contact the HAEA Health Advocates at health@haea.org

---

#BeyondHAE Podcast: A Day in the Life - Jasmeen's Journey of Resilience

In this episode of the #BeyondHAE podcast, HAEA Youth Leadership Council member Carlie chats with Youth Advocate Jasmeen about her personal journey with HAE. Diagnosed as a teenager, Jasmeen shares how she has learned to manage her condition while balancing the demands of school, work, and everyday life. Tune in to hear an inspiring conversation about resilience, growth, and navigating life with HAE.

Listen to the #BeyondHAE podcast HERE!
#BeyondHAE is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

---

HAE Speaks Podcast Episode 50: Innovations in HAE with KalVista

This month's episode of the HAE Speaks podcast spotlights the innovative strides KalVista is making to improve care for people within the HAE community. ​It will offer insights into KalVista’s dedication to the HAE community by addressing unmet needs in HAE management and an overview of their clinical development program.

Join hosts Nicole Sweeny, Chief Commercial Officer and Michael Smith, Senior Vice President of Development as they are interviewed by Linda, a Person Living with HAE.

Listen to the HAE Speaks podcast HERE!
HAE Speaks is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

---

Thursday, November 21st at 7:00 PM ET / 4:00 PM PT

• HAEA Treatment Education Series Webinar: Back to Takhzyro
• Guest Speakers: Joshua Jacobs, MD, and Takeda Patient Advocates Mike and Lexi
• Sponsored by: Takeda
• Link Webinar: https://haea.zoom.us/j/88213465406
• Phone: +1 646 558 8656
  Webinar ID: 882 1346 5406
• Register here: https://www.facebook.com/share/FTL8kV73srBdMCKr/

Tuesday, December 3rd at 7:00 PM ET / 4:00 PM PT

• HAEA Virtual Self-Care Bingo Event
• How well do you prioritize yourself? The HAEA Health and Research team invites you to join a virtual bingo game with a unique twist. Instead of traditional numbers, the Self-Care Bingo cards are filled with activities and scenarios focused on self-care.
• Register here: https://fundraise.haea.org/event/us-haea-virtual-self-care-bingo-night/e619128

---

What is a Clinical Trial?
Clinical trials are research studies conducted to evaluate whether a medicine to treat HAE is safe and effective in humans. Clinical trials are a critical part of drug development and are required before a treatment can be approved by the Federal Drug Administration (FDA) and become available by prescription.

What are the benefits of participating in a Clinical Trial?
Clinical trials can offer an open-label extension, which means free access to HAE medicines being studied until they are approved and commercially available. Participation in a clinical trial also provides regular touchpoints with an HAE physician throughout the trial period and allows you to have a more active role in your health care.

Following is a list of clinical trials currently underway. If you are interested in receiving more information on clinical trials, or are interested in participating in any of the trials listed below, please reach out to the HAEA Research Team at research@haea.org.

---

The RAPIDe-3 Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the RAPIDe-3 trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational oral drug (deucrictibant) to relieve the symptoms of HAE attacks. This is a placebo-controlled study, and if you choose to participate you will take capsules to treat a total of two HAE attacks. The use of an approved on-demand medication to treat acute attacks is permitted and will be provided at no cost.

You may qualify for the RAPIDe-3 trial if you are diagnosed with HAE Type I or II and be between the ages of 12 and 75 years old, with at least two attacks in the past three months and have had experience using standard-of-care treatment to manage on-demand treatment for HAE attacks. After completing the RAPIDe-3 Study, participants may be eligible to join an open-label extension (OLE) study, and continue receiving deucrictibant to treat acute HAE attacks at no cost.

---

The HAELO Study

The US HAEA is currently assisting Intellia in recruiting people with HAE for the HAELO study.

The HAELO study is a phase 3 study to evaluate the efficacy and safety of NTLA-2002 compared to placebo in adults with HAE. This investigational drug uses CRISPR gene editing to potentially treat genetic diseases.

To qualify for the HAELO study, participants must be 18 years of age or older with a clinical history consistent with HAE Type 1 or Type 2. This study will help researchers learn if the study drug is safe and effective for people with HAE when compared with placebo.

---

The OASIS-HAE Plus Study

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE Plus study.

The OASIS-HAE Plus study is an open-label extension study without placebo, evaluating the safety and effectiveness of an investigational subcutaneous preventive medicine called donidalorsen, which is given once every 4 or 8 weeks. This investigational drug uses a technology called antisense, which targets the kallikrein generating system using messenger RNA to suppress the protein that produces kallikrein.

To qualify for the OASIS-HAE Plus study, participants must be 12 years of age or older with a documented diagnosis of HAE. This study will help researchers learn if the study drug is safe and effective for people with HAE when given over a long-term period. Participants in the OASIS-HAE Plus study are either switching over from a different prophylaxis therapy, or continuing on from another donidalorsen study.

---

CSL312_3003 Pediatric Study

The US HAEA is currently assisting CSL Behring in recruiting children ages 2-11 with HAE for the CSL312_3003 study, which will investigate the safety and efficacy of subcutaneous CSL312 for prophylactic treatment of pediatric-age individuals with HAE.

---

KONFIDENT-KID Study

The US HAEA is currently assisting Kalvista in recruiting children ages 2-11 with HAE for the KONFIDENT-KID study, a worldwide clinical research study to investigate the efficacy of an investigational oral drug (sebetralstat) to relieve the symptoms of HAE attacks in adolescent patients.

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 an HAEA advocate at 866-798-5598 to see if there will be an active clinical trial site in your area.

---

Social Media Snapshots

Don’t miss the latest HAEA news and announcements, connect with us on social media!


Update your HAEA membership information HERE!

---

10560 Main Street, Suite PS40 Fairfax City, VA 22030		CONTACT AN HAE ADVOCATE: (866) 798-5598
DONATE		JOIN HAEA
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 © (2024) 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 info@haea.org.