Happy New Year 2022!
Dear HAEA Friends,
Warm New Year wishes to you and your families along with a sincere hope that 2022 is the year when we put COVID 19 in the rearview mirror. Welcome to the newly designed HAE in Action newsletter.
As we start the new year, it’s fitting to reflect on the journey that has brought us to where we are today. Together, we have built a community of people with HAE, their families, and caregivers that is over 7,000 strong. That accomplishment is unprecedented in rare disease circles and reflects the special bond that we have all worked so hard to build over the past 2 decades. Looking back, we are happy with our successes in 2021 that included FDA approval of an oral preventive medicine, publication of a groundbreaking HAEA initiated study showing the economic value and quality of life gains from HAE treatments, and record attendance and participation in HAEA events including our Virtual Summit.
Our 2021 achievements, however, are now old news and we are already moving forward with an even more extensive array of programs, activities, and services tailored to meet the evolving needs of the HAE Community. Our emphasis in 2022 will be to:
• protect your access to and reimbursement for HAE medicines by educating insurers as well as providing hands on assistance with reimbursement denials
• build the sense of community through events that focus on raising HAE awareness and offering educational opportunities including specific programming for our HAEA Youth
• conduct research and publish medical journal studies that demonstrate the life changing impact of HAE medicines
• continue to nurture an environment conducive to developing breakthrough HAE therapies
Stay tuned to future issues of HAE in Action where we will provide details on our exciting 2022 initiatives as they are rolled out.
The incredible number of effective therapies that are now available has everything to do with the strength of our galvanized and motivated community. Let’s work together in 2022 to continue building the nationwide HAE movement that has served us so remarkably well.
US HAEA President & CEO
|| HAEA in Action Newsletter ReDesigned
A Fresh Take on the HAEA in Action Newsletter
The HAEA has taken a big step forward in fulfilling our longstanding goal of providing timely information on the latest HAE-related developments! This edition of our HAEA in Action newsletter has a fresh new look and is more concise, yet remains highly informative and relevant. In addition, we have added a table of contents that will allow you to quickly find and then read articles on topics that interest you the most.
If you have questions or suggestions on how we can further improve our HAEA in Action Newsletter, please contact firstname.lastname@example.org or reach out to an HAEA Advocate at 866-798-5598. As always, we look forward to your feedback.
|| HAEA Round Table|
Join us at the HAEA Round Table, where members of our community will be able to talk about how they have dealt with the unique challenges of HAE. The HAEA Round Table events will premiere on Facebook Live, so make sure to tune in to the US HAEA official Facebook page to learn more about how others manage their HAE!
The first event in the HAEA Round Table series will be on Tuesday February 22nd at 6:30 PM ET. This event will feature children ages 5-11 and will showcase their answers to questions related to their personal experiences in living with HAE.
HAEA Round Table Calendar:
• February 22nd
For Kids with HAE Ages 5-11 - How Does It Feel to Be a Kid with HAE?
• April 12th
For Kids with HAE Ages 12-15 - Anxiety, Stress, and Growth with HAE
• June 14th
For Kids with HAE Ages 16-20 - How Do You Talk to Others About Your HAE?
• August 9th
For Young Adults with HAE - Growing Into Adulthood with HAE
• October 11th
For BabyBoomers with HAE - How Does HAE Affect Aging?
• November 1st
For Caregivers and Parents - What is the Best Way to Support Someone with HAE?
|| Health Team Checklist|
CHECK it out - 10 Tips for a Healthier 2022
1. Self Care - take time for yourself everyday.
2. Make an effort to practice a healthy diet, daily exercise, relaxation, and meditation.
3. Check in with your physician and set up your appointment date early this year.
4. Keep a copy of your lab results.
5. Know your prior authorization date and process 30 days before it expires. Ask your doctor's office staff to help as they know how to handle prior authorization renewals.
6. Know your prescription renewal date - DO NOT wait until the last minute.
7. Check in with your Specialty Pharmacy AND Drug Manufacturer to update any changes to your contact or insurance information.
8. Call your drug manufacturer to update your insurance details and contact information.
9. Contact your insurance company to see if there are any changes for 2022.
10. Check-in with the HAEA Health Team - we are here for you!
Throughout 2022, the US HAEA will spotlight Hereditary Angioedema (HAE) treating physicians who have made an impact within the HAE community.
This month, we will be recognizing US HAEA Medical Advisory Board physician, Timothy Craig, DO.
"I am always happy and excited to help individuals with HAE become everything that they wish to be. Over the past 21 years, the changes in therapies have made me so hopeful. Watching individuals who have been severely compromised become normalized is why I am excited to be an HAE researcher and care provider. I am dedicated to improving the life of my patients and hopefully allow them to be all they are capable of becoming."
Thank you Dr. Craig for your dedicated service to the HAE community!
|| HAEA Community Blog|
Do You Have A Story or Opinion to Share About Your HAE?
The HAEA is excited to announce that we have created a blog where you can share your experiences in your own words with the HAEA community!
This blog highlights stories written by HAE community members, for HAE community members. A space to amplify our voices through our experiences, reflections, perspectives, and more!
Access the HAEA Community Blog today at haea.org!
Interested in sharing your own story through the HAEA Community Blog? Share your story here or contact Hannah Carroll at email@example.com for more information!
HAE Speaks Podcast
Download and listen to HAE Speaks, a podcast where people with HAE get the chance to broadcast their stories to the world! HAE Speaks gives you the opportunity to learn more about your own HAE through the shared experiences presented by our monthly hosts. You can download HAE Speaks on Apple Podcasts, Spotify, or wherever you listen to your podcasts!
Episode 21: In this episode, Mike and Missy discuss HAEA Meet and Greet events, and answer some important questions. What is an HAEA Meet and Greet? Who should attend? Why should you attend?
Do you have a topic, question, or idea that you would like us to cover? Send your suggestion to Mike Mallory at firstname.lastname@example.org.
#BeyondHAE Youth Podcast - January Episode
In this month's episode of the #BeyondHAE podcast, Kira talks about her diagnosis journey as the first person in her family to be diagnosed with HAE. She talks about growing up with the condition and the hurdles that she overcame to move away from home to attend college.
#BeyondHAE is the only podcast around made exclusively by young people with HAE. Listen to #BeyondHAE to hear different perspectives of how you can live a normal life with HAE. #BeyondHAE is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!
|| Clinical Trial Updates|
Clinical trials are research studies conducted with people affected by HAE to evaluate whether a drug is safe and effective in humans. They are one of the final stages of the medical research and development process and follow strict standards to protect people.
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.
Following is a list of clinical trials currently underway.
RAPIDe-1 & CHAPTER-1 Studies
The US HAEA is currently assisting Pharvaris in recruiting people with HAE for two clinical research studies to investigate the safety and effectiveness of an investigational oral drug for both acute and prophylactic use of Hereditary Angioedema (HAE) attacks.
In the RAPIDe-1 study, doctors will be evaluating how effective three different doses of the study medication (PHVS416) are in relieving symptoms associated with HAE attacks. The study drug is in the form of soft capsules taken by mouth. In the CHAPTER-1 study, doctors will be evaluating the effectiveness of PHVS416 as a potential oral treatment to prevent HAE attacks.
To qualify for the RAPIDe-1 study, participants must be diagnosed with HAE Type I or II and be between the ages of 18 and 75 years old, with at least 3 attacks in the last four months or 2 attacks in the last two months.
To qualify for the CHAPTER-1 study, participants must be diagnosed with HAE Type I or II and be between the ages of 18 and 75 years old, with at least 3 attacks in the last 3 months or 2 qualifying attacks during the screening period. The use of an approved on-demand medication to treat acute attacks is permitted.
The US HAEA is currently assisting CSL Behring in recruiting people with HAE for the CSL312_3002 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. In this study, doctors will be evaluating the long term use of garadacimab.
The trial is currently fully recruited for adult participants, however, a few more adolescent participants (ages 12 - 17) are needed to meet their required numbers.
This is an open label study with no placebo phase required, which means that all participants will receive garadacimab for at least one year, and the use of an on-demand medication to help with acute attacks is permitted.
Normal C1-Inhibitor Trial
The US HAEA continues to support Takeda’s efforts in recruiting people with HAE with Normal C1-Inhibitor for their clinical trials. Individual sites will comply with state and local guidelines and safety protocols for bringing individuals into clinics. There are currently 14 active sites in the US.
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 HAE advocate at 866-798-5598 to see if there will be an active clinical trial site in your area.
|| HAEA Treatment Education Series Webinar|
|| HAEA Virtual Meet & Greets|
Are you interested in meeting others in the HAE community?
Do you have questions for others living with HAE? Or would you just like to network with other HAEA members? The HAEA Virtual Meet & Greet Events are a perfect way to reach out and get to know others affected by HAE. Each month HAEA staff will be presenting on programs, resources, and relevant HAE topics as well as providing an opportunity for the HAE community to meet each other. 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 email@example.com.
What would you tell someone who is considering attending an HAEA Meet & Greet?
"I highly recommend this. You will learn so much about resources for HAE. It was so nice to meet other people."
~ Josephine C.
Upcoming Haea Virtual Meet & Greet Events
|10560 Main Street, Suite PS40
Fairfax City, VA 22030
||CONTACT AN HAE ADVOCATE:
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 © (2022) 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 firstname.lastname@example.org.