From Patient Advocate/Social Media Manager Ianice Viel, US HAEA
HAE Research: The US HAEA continues to sponsor, produce, and disseminate scientific information that leads to better care for people with HAE. Some of our recently completed projects are highlighted below.
Hereditary Angioedema Primer: The US HAEA joined forces with the prestigious medical journal Allergy and Asthma Proceedings and HAE physician-experts to develop a special supplemental edition on HAE diagnosis and management. The recently published (1 November 2020) supplement contains 14 peer reviewed articles on a range of 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.
US HAEA Medical Advisory Board 2020 Guidelines: We are excited to announce that the US HAEA Medical Advisory Board 2020 patient-centric guidelines for healthcare professionals have been approved for publication! These guidelines provide the medical community with a comprehensive scientific overview of HAE in all its forms (type 1, type 2, and HAE with normal C1 Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach. You can view these downloadable guidelines in advance of final printing in the Journal of Allergy and Clinical Immunology—In Practice at https://bit.ly/MAB-guidelines.
US HAEA and Angioedema Center at UCSD Study of COVID-19: The US HAEA and the US HAEA Angioedema Center at UCSD are conducting a survey to help determine if
- people with HAE are at greater risk of contracting COVID-19, or
- having HAE or taking HAE medicines affect the duration and/or severity of an infection?
The goal of the study is to safeguard the HAEA community’s wellbeing by understanding the interaction of HAE and the virus. Almost 1,400 members of the US HAEA have already responded, and the survey will remain open for the indefinite future so that responses can be updated if someone is unfortunate enough to contract COVID-19.
HAEA Study of Insurance Reimbursement Challenges Faced by People with HAE: We have completed a major research initiative designed to help people with HAE and physicians who prescribe our medicines to obtain insurance reimbursement for HAE medicines. We have conducted detailed surveys of those with HAE, reimbursement specialists in the offices of prescribing physicians, and 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 separate guidebooks for people with HAE and physicians who prescribe HAE medicines to help navigate the complex and often frustrating process for obtaining reimbursement for HAE medicines. Such guidebooks will be available within the next coming weeks.
Medical Journal Publishes US HAEA Health Economics Study Demonstrating the Value of New HAE Preventive Medicines: The US HAEA in collaboration initiated a study in response to research published by a group of economists who receive funding from the insurance industry. Their economic research concluded that the new preventive HAE medicines are not cost effective. The US HAEA and HAE International questioned the methods and conclusions of this publication and performed a comprehensive analysis to assess the financial and quality of life impact of the new preventive medicines. The data provided by the US HAEA community (through the largest survey of people with HAE ever conducted) reveals that the new preventive therapies yield substantial economic value in light of (1) remarkable decreases in attack frequency and (2) statistically significant improvements in patient quality of life.
Continued HAEA Investment into Research for HAE with Normal C1-Inhibitor: We are 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. Scientists at the US HAEA Angioedema Center at UCSD San Diego now have in-house genetic testing for several genes that are believed to be implicated with a deficiency in C1-Inhibitor. Physicians and scientists at the Center are committed to expanding the knowledge of this condition and working tirelessly to the development of suitable treatments.
2020 US HAEA Virtual Events: In response to the global COVID-19 pandemic, the US HAEA quickly adapted and found a way to seamlessly provide its programs and services in a virtual format. The shift to online communication has been embraced by members of the community and provides special opportunities to engage in programs that promote HAE awareness, HAE-specific learning, and advocacy training.
HAEA Community Steps up for hae day :-) 2020: This year we celebrated hae day :-) by hosting a Stepping Forward Together Virtual Walk. During the entire month of May, our community celebrated the awareness day by raising awareness through the Virtual Walk. This exciting event brought together over 280 participants who joined the HAE community in logging over 15,000 miles for HAE Awareness.
HAEA Meet & Greet events: Before the COVID-19 pandemic, we had scheduled a robust lineup of in-person Meet and Greet events planned over the course of 2020, however, we quickly transferred these popular events into a virtual platform to keep our constituents healthy while allowing them to still connect with us and with each other.
2020 HAE IN MOTION Virtual Challenge: We are grateful to the over 500 participants from across the United States and Puerto Rico who joined us, both individually and as teams, for the 2020 HAE IN-MOTION Virtual Challenge! This exciting event brought together the HAE community in logging over 28,000 miles.
2020 HAEA Virtual Capitol Hill Day: The HAEA community joined forces and participated in the 2020 HAEA Virtual Capitol Hill Day. With over 100 registrants committed to having their voices heard by policymakers, this event is sure to create lasting change for the HAE community. Together, we are sending a powerful message in favor of health care coverage, charitable assistance programs, and access to therapies to our elected leaders.
HAEA Children’s Book Series – Nico’s Surprise: The second book in the HAEA Children’s Book Series, “Nico’s Surprise”, is now available! If your family enjoyed reading Nico’s Lunchbox, you’ll love “Nico’s Surprise”. The HAEA Children’s Book Series is a timeless resource for children learning to cope with their HAE.
“As a four-year-old with HAE, my daughter doesn’t know another child that is going through what she goes through. Nico felt relatable to her and gave her the feeling that she wasn’t alone in her experiences!” – John.
Attention all Spanish speaking HAE friends, we have exciting news for you! The second book of the series, “Nico’s Surprise”, is currently being translated for publication in Spanish. Stay tuned to the US HAEA social media channels and emails for the announcement of when “Nico’s Surprise” is officially available for order in Spanish.
US HAEA Webinar Briefs provide useful and timely information: We have developed a series of educational webinar briefs, hosted by President and CEO, Tony Castaldo, that presents information on issues that are important to the HAEA community. The webinar briefs, which are easily accessible through the US HAEA webpage and social media outlets, cover a wide array of topics and are a great way to stay updated with the latest developments affecting the HAE community, including COVID-19. Webinar topics include:
- COVID-19 and HAE, with Dr. Marc Riedl, Clinical Director at the US HAEA Angioedema Center at University of California San Diego
- COVID-19 and Insurance with HAEA Health Advocate, Troyce Venturella, MPH, RN, CCM
- COVID-19 recovered HAE Patient Scott McCoy
- HAEA Scholarships Support Education for our Youth, with HAEA Patient Advocate, Lisa Facciolla
- Why People with HAE Should Not Fear the Dentist, with Dr. Jonathan Bernstein
- Clinical Trial Update: BioCryst’s Oral Medicine for Attack Prevention
- Clinical Trial Update: Kalvista’s Clinical Development Program for Oral HAE Therapies
>> Watch these webinar briefs through the US HAEA YouTube Channel (ushaea).
2020 US HAEA Youth Events: We work hard to provide effective and meaningful programming and support for youth members throughout the year. In 2020, some of the US HAEA Youth programs included:
Social Media Internship: The HAEA Social Media Internship is designed to provide young people in the HAEA community with an opportunity to gain professional development and advocacy skills. The internship offers patients and caregivers real world experience in social media content and creation, social media strategy and marketing, storytelling and advocacy, and more! Find us on Instagram by searching for @HAEAyouth. This internship is currently exclusive to HAEA community members living in the United States between the ages of 14 and 25.
HAEA Comfort Kits: This year we launched an exciting new program for Brady Club members, HAE Comfort Kits! Each kit is designed to offer support to children who are struggling with HAE attacks or administering medication. Since children can face unique challenges in coping with the diagnosis of a rare chronic illness, these kits help them to understand their HAE and know that the HAEA is here to help. HAE comfort kits are currently only available to HAEA members in the United States.
The Brady Club: The Brady Club is an international initiative working with HAE International member organizations around the globe to provide kids with a fun platform where they can learn about HAE, complete interactive activities, and read about other kids in the HAE community. Registered members receive quarterly activity books that include interactive activities for your child to complete, HAE facts, collectable stickers, and more!
Virtual Legislative Advocacy Training Program: This year, we developed a program to engage young HAEA community members in legislative advocacy. This six part training program led participants through the completion of a series of activities to help them become more effective advocates. Participants learned how to effectively tell their personal HAE story, research and learn about their congressional representatives, identify their representatives’ stance on health care, and develop a pitch to invite their representative to support the HAE community.
BeyondHAE Coloring Contest: The HAEA’s #BeyondHAE Coloring Contest invited children, ages 14 and under, who either have HAE or love someone who does, to create a picture that illustrates what a life #BeyondHAE looks to them! We really enjoyed seeing all the beautiful artwork that was submitted by our community!
#BeyondHAE Podcast: The #BeyondHAE Podcast is a youth produced podcast series dedicated to amplifying the voices and stories of young people affected by HAE. Topics range from sibling support, advocacy, disease management, stories of independence and perseverance, and more! Search for #BeyondHAE on all major podcast platforms!
HAEA Youth Instagram Page: Follow @HAEAyouth on Instagram to get youth program updates, read patient stories, learn about upcoming events, read interesting HAE facts, participate in fun giveaways, and more.
