Even though the 2020 holiday season presents some unusual challenges, we are confident that our resilient HAEA community will continue finding creative ways to experience joys and stay connected to family and loved ones. As we near the end of this year, we are inspired by the record setting participation in HAEA events, which reflects your willingness to embrace change, overcome obstacles, and remain engaged with the community. These are the very same qualities that resulted in 7 FDA approved medicines to treat HAE, with the 8th coming within the next couple of days!
Your enthusiastic participation in the HAEA’s virtual events enabled the incredible success of hae day :-), the HAE IN-MOTION® Virtual Challenge, Meet and Greet events, and Capitol Hill Day, just to name a few. Our HAEA youth also did not miss a beat, as the younger members of our community celebrated the publication of the children’s book Nico’s Surprise with a virtual campfire reading, and participated in a #BeyondHAE coloring contest. Our “older” youth members showed their continued dedication to the cause by participating in a HAEA designed Virtual Advocacy Training Program, a structured learning experience for the HAEA advocates of the future.
Empathy, compassion, and an enduring presence are the hallmarks of what drives your fellow patients and caregivers at the HAEA. We expanded our support groups to help the community stay connected and manage stress. Throughout the year we produced live webinars with expert HAE physicians, topical webinar briefs, and podcasts to keep you updated on the latest HAE news. In addition, as you will read below, the HAEA launched a variety of research initiatives to improve access to medicines and overall quality of life.
All of us at the HAEA, wish you and your families a happy and safe holiday season.
US HAEA President & CEO
Thanks to your generous donations, we are working hard on many fronts to sponsor research to improve the quality of life of people with HAE. We are pleased to share with you an overview of current research initiatives:
Hereditary Angioedema Primer
The HAEA joined forces with the prestigious medical journal Allergy and Asthma Proceedings and expert HAE physicians to develop a special supplemental edition on HAE diagnosis and management. The supplement was published in the journal’s November 1st edition. It contains 14 peer reviewed articles on vitally important HAE topics, and has been mailed to over 40,000 health care providers, including a targeted list of allergy-immunology fellows and specialists in training. As an HAEA member, you have free access to the supplement here.
US HAEA Medical Advisory Board 2020 Guidelines
The US HAEA and its medical advisors were recently notified that the new, patient-centric guidelines for healthcare professionals have been approved for publication. The guidelines provide the medical community with a comprehensive scientific overview of HAE in all its forms (type 1, type 2, and HAE with Normal C1Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach. The guidelines embody a consensus of prominent HAE physician scientists and should be used as an authoritative source for treatment related questions raised by health insurers. The guidelines are downloadable in advance of final printing in the Journal of Allergy and Clinical Immunology—In Practice here.
US HAEA and Angioedema Center at UCSD Study of COVID-19
The US HAEA and the Angioedema Center at UCSD have been conducting a survey to help determine if people with HAE are at greater risk of contracting COVID-19, or manifest symptoms different from those seen in the general population. The goal of the study is to safeguard the HAEA community’s wellbeing by understanding the interaction of HAE and the virus. The results of this survey will help medical professionals develop the best treatment options and protocols for people with HAE who are afflicted with the virus. We thank everyone who has participated in the survey thus far, and encourage those who have not filled it out yet, to complete it. The survey will remain open for the indefinite future so that anyone with HAE or household members can update their response if someone is unfortunate enough to contract COVID-19. We hope to have “interim” results ready to share in the very near future.
HAEA Study of Insurance Reimbursement Challenges Faced by People with HAE
The HAEA has completed a major research initiative designed to help people with HAE and physicians who prescribe our medicines to obtain insurance reimbursement for HAE medicines. To understand all aspects of the issue, we conducted detailed surveys of people with HAE and reimbursement specialists in the offices of prescribing physicians. We also conducted structured interviews with a representative sample of health insurers to gather their perspectives on HAE medicines. Based on this data, we are preparing guidebooks to help navigate the complex and often frustrating process for obtaining reimbursement for HAE medicines. Separate guidebooks are being prepared for people with HAE and physicians who prescribe HAE medicines, and will be available in the New Year.
HAEA Health Economics Study Demonstrates the Value of New HAE Preventive Medicines
A study of HAE medicines published by a group of economists who receive funding from the insurance industry concluded that new preventive HAE medicines are not cost effective. The HAEA questioned the methods and conclusions of this study, and responded by initiating a comprehensive analysis to determine the financial and quality of life impact of the new preventive medicines. Almost 800 people with HAE participated in the study, and the results point to a drastically different reality from the economists’ study. The data provided by the HAEA community reveals that the new preventive therapies yield (1) substantial economic value in light of remarkable decreases in attack frequency and (2) statistically significant improvements in patient quality of life. A healthier community translates into an active and productive community that is self-reliant, generates economic activity, and is able to better afford their treatments. The manuscript has been submitted to a medical journal and approved for publication after an extensive peer review. The paper will be published and available within the next month.
Continued HAEA Investment into Research for HAE with Normal C1-Inhibitor
The HAEA is dedicated to supporting the important members of our community who suffer from swelling that is not caused by a deficiency in C1-Inhibitor. We recognize that a sharpened scientific understanding of HAE biology and genetics is the first step in developing new and more effective treatments. That is why we support the search for genetic causes and biomarkers that define HAE with Normal C1-Inhibitor. Scientists at the US HAEA Angioedema Center at UCSD now have in-house genetic testing for several genes that are believed to be implicated. Physician scientists at the Center are committed to expanding the knowledge of this condition and working tirelessly to the development of suitable treatments.
Kids, teens, and young adults with HAE face special challenges navigating life while dealing with a debilitating rare disease.
In response to the global COVID-19 pandemic, the HAEA has found a way to seamlessly continue providing its programs and services in a virtual format. The shift to online communication has been embraced by the youngest members of the community, and provides special opportunities to engage them in programs that promote HAE-specific learning and advocacy training. Investing in our HAEA Youth ensures that our future leaders will be equipped to continue advancing the HAE cause for generations to come.
This year, we are asking you to help us inspire, empower, and engage our HAEA Youth by donating to the HAEA Youth Programs. Let’s show our support by investing in the amazing young people in the HAEA community.
Your charitable donation of $20, $50, $100, or more, will support the following special Youth Programs:
Donate $100 to the Pam King HAEA Scholarship Program and help a college student with HAE. The HAEA provides scholarships of up to $2,500 twice a year.
Donate $50 to support the highly successful Youth Advocacy Program that teaches young people with HAE how to engage with elected representatives and advocate for themselves and the needs of the HAE community.
Donate $20 and we will send copies of the HAEA Children’s Book Series to local school libraries to help raise awareness about HAE. Your generous tax-deductible contribution is an investment in the future to inspire, empower, and engage the next generation of HAEA leaders. To support the youngest members of our community, please access the #Families4HAE crowdfunding page here!
Or send a check to:
Hereditary Angioedema Association
10560 Main Street, Suite PS40
Fairfax City, VA 22030
Your generous tax-deductible contribution will help inspire, empower, and engage the next generation of HAEA leaders.
It's the most wonderful time of the year - but also one of the busiest! Please take a moment and go over this month's top recommendations to stay healthy through the holidays.
Don't wait - deadlines are just around the corner for insurance selection. Remember to be proactive, research, and compare! The HAEA Health Advocates team is here to answer your questions and provide direction as well. Make sure to keep an eye on the upcoming deadlines and let us know if we can help! Note that states may opt to allow for extensions to open enrollments but these are not guaranteed!
Follow up with your physician, insurance company, specialty pharmacy, and manufacturer. Ensuring that you have all the correct information will help with prior authorizations that occur this time of year.
The holiday season can impact shipments and delivery dates. Please make sure you order your medication on time to stay on target with your treatment.
The winter and the holidays can impact the way you feel. If you can’t spend time in-person with family and friends join us in one of the HAEA Support Groups. These support groups provide an opportunity to talk about your own mental health and discover useful tips from other HAEA members. Contact Troyce Venturella for more information at firstname.lastname@example.org.
Reach out to the US HAEA Health Advocates at 866-798-5598. Whether you need assistance with: insurance issues, finding an HAE expert physician, need to update your member information, want to join a virtual support group , or just have an HAE related question to ask, HAEA Patient Health Advocates are here for you!
Message from Takeda
Takeda lifted the COVID-19 screening hold for the SHP643-303 BMA Study, and is now recruiting for the clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing patients into clinics. There are now 8 clinical trial sites actively enrolling with additional sites being activated soon.
If you have HAE type 1 or 2 or HAE with Normal C1-Inhibitor, and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at email@example.com to see if there will be an active clinical trial site in your area.
Kids LOVE receiving their Brady Club Activity Book in the mail every quarter! The Brady Club offers a wide array of fun along with educational and interactive activities for children to learn about HAE and how to cope with it. If your children are not yet members of the Brady Club, register them for FREE by clicking on the link below. Brady Club members enjoy tons of FREE perks AND surprises!
Learning to cope with HAE is particularly challenging for young children. HAE attacks may spark fear and sadness in addition to discomfort and pain. To help kids cope with these challenging times, we are now offering personalized comfort kits that we mail out directly to them. Take a moment to brighten your child’s day by ordering a comfort kit today!
The HAEA Comfort Kits are available for children between the ages of 2 and 13, who reside in the United States and have a confirmed HAE diagnosis.
One kit per child and the child must be a member of the US HAEA to qualify.
Email Lisa Facciolla at firstname.lastname@example.org to request a kit for your child.
Looking for a special holiday gift your children will love? The HAEA’s children’s books, Nico’s Lunchbox and Nico’s Surprise, are sure to delight! The popular children’s books series follows the adventures of Nico and his friends as they learn about HAE, build new friendships, and explore the world around them.
Limited Holiday Offer: If you order either book by December 31, 2020, we’ll send you a second complimentary copy of the same book. Keep the second copy for your family or spread holiday cheer by giving it to a friend or donating it to a school library. Holiday gift wrapping included!
BONUS: With every order, we’ll include a collectible sticker and an activity guide. Your kids will enjoy hours of fun as they complete puzzles, scavenger hunts, virtual trips, and more.
For additional information or questions, please contact email@example.com.
Then join the US HAEA Scientific Registry!
The HAEA actively promotes research that leads to more effective medicines, better clinical care, and enhanced quality of life for all affected by HAE. Through the years, we have gained access to various HAE therapies, but we continue to work on innovative, improved treatments.
How can you pave the path for future generations?
Join the US HAEA’s Research Registry and provide researchers with the biosamples and information needed to conduct critical research to unlock the remaining mysteries of HAE, and find innovative therapies and potential cures.
Who can join?
Anyone with HAE or anyone who has a blood relative with HAE.
Already a member?
Thank you for being part of this very important cause! Be sure to fill out your Quarterly Reports and ensure your Attack Reports are updated because this information is vital to ongoing research!
Advance HAE App - Download the FREE Advance HAE App today from the Apple and Android App Store!
The Advance HAE mobile app makes it quick and easy to create your own personal record of life with HAE, storing all of the information on your HAE attacks and your HAE therapy/therapies. The app also allows you to create personalized, user-friendly graphs of the data you enter.
New feature! You can now download a printer-friendly copy of your data to share with your physician, or use for an at-a-glance view of your medication administration and attack history.
Are you currently using Ruconest as part of your treatment plan?
HAEA friends who are prescribed the HAE medicine Ruconest can join the US HAEA Scientific Registry and participate in the Ruconest Safety Registry. Joining will help fulfill a regulatory requirement for information on attacks treated with Ruconest.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series tells the stories and life experiences of individuals affected by HAE, and provides relevant information, explained simply through friendly and open conversations. Make HAE Speaks a regular addition to your podcast playlist and listen today on your favorite platform!
Episode 8: As you may already know, the HAEA has adapted to the uncertainty provoked by the COVID-19 pandemic by swiftly transitioning our 2020 scheduled programs and events to fun and engaging virtual platforms. In just a few months, we have successfully developed and launched interactive contests, advocacy training modules, virtual Meet & Greet events, and more to fulfill the needs of the HAEA community. We have also increased the number of webinars and their content. Listen as HAEA staff discuss how together, we have adapted to this virtual world.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to firstname.lastname@example.org.
The importance of HAE Advocacy.
Hereditary Angioedema (HAE) has a huge impact on the lives of every patient, caregiver, and loved ones. That is why advocating for HAE is so important to raise HAE awareness and educate legislators on policies that can change the quality of life of people affected by HAE and their families.
“Learning and participating in advocacy campaigns through the HAEA helped me to decide what I wanted to do with my career. In just six months, I will have my law degree at age 23. I am still not set in what type of law I want to practice, but I do know that I want to run for some form of elected office one day.” - Kelsie
It is sometimes hard for others to understand the experience of HAE patients, but this is why it is so important to use your voice. Kelsie is a perfect example of someone who is creating the change she wants to see in the world. Through her advocacy efforts with the HAEA at Capitol Hill Day every year, she used her voice to tell legislators what she needs as their constituent and as an HAE patient. Together, we can all make our voices heard.
Remember that You Can Count on Us!
Reach out to the US HAEA Patient Advocates at (866) 798-5598 for assistance or visit our website, HAEA.org, for more information.
Every month throughout 2020, we spotlight a different patient and their unique HAE story. This month we are spotlighting Brianna. We hope you enjoy the following story during the month of December.
“I was diagnosed with Hereditary Angioedema (HAE) at age 13. At first, the diagnosis was scary. I considered the diagnosis of an impediment. I felt that there was something wrong with me.
I am so thankful for the modern treatment options available. They have made my life much easier and more fulfilling. I no longer feel like I have anything "wrong" with me. Actually, some days, I forget I have HAE at all.
I can now move away from home for college as a result, and truly feel independent. I do not have a sense of anxiety over being unprepared or dependent on others for assistance. Modern treatment options made me feel.”
Please contact an HAEA Patient Advocate for assistance at (866) 798-5598, or visit our website at HAEA.org if you would like to share your story.
The #BeyondHAE Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Hear stories from young people affected by HAE, as they share the ways they navigate life with HAE or support a diagnosed family member.
Episode 22: is hosted by Jack from New Jersey. Jack talks about his many trips to the ER and shares some stories about his experiences there. ER trips can be stressful and emotionally draining, but advocating for yourself and your needs is an important lesson that can reduce unnecessary procedures and wait times.
The HAEA store is the perfect place for all your holiday shopping for loved ones affected by Hereditary Angioedema (HAE). You can order t-shirts, hats, backpacks, mugs, and so much more! You can even personalize your own merchandise for your own HAE fundraising campaigns for friends and family to wear.
Plan a fun night to meet other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and meet other people affected by HAE and their families in your area. If you are interested in participating in an HAEA Virtual Meet & Greet, and connect with people close by, 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 a future HAEA Meet & Greet?
“It’s great and a wonderful platform for networking and sharing stories and experiences.” Francis K.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Seattle HAEA Virtual Meet & Greet
Tuesday, December 1, 2020, 6:30 PM PST
Minneapolis HAEA Virtual Meet & Greet
Tuesday, December 15, 2020, 6:30 PM CST
Participants will receive an HAEA Goodie bag after the event!
For more information, please contact HAEA Patient Advocate, Mike Mallory at firstname.lastname@example.org or (513) 858-9370.
Link Webinar: https://haea.zoom.us/j/97237967537
Phone Number: +1 646 558 8656 (Webinar ID: 972 3796 7537)