From Ianice Viel, Digital & Social Media Manager, US HAEA:
2021 US HAEA Virtual Summit Series: In light of the COVID-19 restrictions, the HAEA reimagined and designed an innovative alternative to the in-person Summits we had held every other year over the past two decades.
The 2021 US HAEA Virtual Summit featured four live events that took place in May, June, July, and August, as well as pre-recorded videos of important HAE topics. All live events were recorded and are available for viewing along with the pre-recorded videos throughout September. Over 1,200 friends from across the United States connected with each other to learn more about all things HAE-related through our innovative Virtual Summit Platform.
The Virtual Summit Series kicked off on hae day :-) 2021, with US HAEA President, Anthony J. Castaldo, discussing the remarkable improvements in the HAEA community’s quality of life and the importance of ongoing advocacy to protect access to HAE medicines.
This first Series event also showcased a variety of on-demand sessions that included a conversation with renowned psychologist Dr. Jennifer Hartstein, who discussed how to cope during a pandemic and manage stress and anxiety, all while having an HAE diagnosis. Also, legislative experts shared ways in which the HAEA community can inform policymakers about the importance of charitable financial assistance and advocate on behalf of patient protection policies. The first Virtual Series event concluded with a virtual launch party and the exclusive reading of the third book in the US HAEA Children’s Book Series, “Nico’s Story”.
The second Series event featured an “Ask the Experts, Physician Q&A” with members of the HAEA Medical Advisory Board. The HAE expert physicians answered our community’s most pressing questions. In addition, Dr. Sandra Christiansen, Dr. Aleena Banerji, and Dr. Tukisa Smith provided insight and answered questions regarding the unique circumstances faced by women and HAE.
The HAEA Medical Advisory board also came together for a panel discussion on the new 2020 Medical Advisory Board Guidelines for the Management of HAE and emphasized the importance of the patient voice in determining an optimal treatment approach. In a separate session, Medical Advisory Board members discussed the latest scientific information regarding diagnosing and treating people with HAE Normal C1-Inhibitor.
Also, expert physicians from the US HAEA Angioedema Center addressed pressing questions regarding how HAE is affected by COVID-19 and communicated results from the HAE and COVID-19 survey conducted by the US HAEA Angioedema Center at UCSD.
The third Series event showcased HAE expert physicians Dr. Marc Riedl and Dr. Raffi Tachdjian discussing the latest in HAE therapies and what the community can expect soon. This third session ended with an informative Q&A session.
On-demand sessions for this third event included a conversation with speaker Robyn Bent, RN, MS, from the FDA, discussing the Agency’s process for reviewing and approving a new medication. Also, HAEA’s Youth Leadership council provided insight on how the youth HAE community can advocate for and spread HAE awareness.
Finally, the last live event of the Summit series presented a vitally important topic — emerging challenges with insurance reimbursement for HAE Medicines. This live event featured representatives from major health insurers who provided the payers’ perspective on how people with HAE and their doctors can successfully address delays and denials.
On-demand sessions included a conversation with US HAEA Health Advocates as they discussed the services and support provided by the US HAEA. In addition, HAEi members provided a global perspective on challenges faced gaining access to and reimbursement for HAE medications. Finally, the cast of “Special Blood”, the documentary film featuring children with HAE, joined together for a long-awaited reunion.
Throughout the rest of September, all the Virtual Summit Series Programs are available to view by visiting the HAEA Virtual Summit Portal. You don’t want to miss out on viewing these highly informative sessions.
Advances in HAE Research: The US HAEA continues its robust research program and is embarking on timely and relevant projects that will focus on the unique needs of the HAE community, including:
An HAEA/HAEi-initiated study, published on 1 March 2021 in a peer-reviewed medical journal that demonstrated the clear economic value and improvement in quality of life offered by HAE medicines. The data from this study revealed that the new preventive therapies yield 1) substantial economic value considering remarkable decreases in attack frequency and 2) statistically significant improvements in patient quality of life.
A study submitted to a medical journal that included 1,600 participants and assesses how the COVID-19 virus affects individuals with HAE. The study is designed to 1) help determine if people with HAE are at greater risk of contracting COVID-19 or if infected by the virus, manifest symptoms different from those seen in the general population, and 2) provide data regarding the impact, if any, of HAE medicines on the susceptibility to, or course of, a COVID-19 infection. The ultimate goal of the study is to safeguard our community’s well-being by understanding the interaction between HAE and the virus. The results of this study will help medical professionals develop the best treatment options and protocols for people with HAE who are afflicted with the virus.
Moving into 2022, the US HAEA plans to continue to actively pursue innovative and ground-breaking research. This includes:
Launching an Epidemiological Study to establish the true prevalence of HAE in the US. The HAEA believes that past estimates underestimate the true incidence of HAE. We are applying a unique methodology to find people with HAE within the largest medical databases available anywhere in the world to determine the true prevalence of HAE in the US. We aim to publish the findings from this study in the Spring of 2022.
A study on HAE in Aging, which will help to better understand the demographic and clinical characteristics, HAE treatment patterns, HAE impact and burden, and perceived health-related quality of life (HRQoL) of the aging HAE population. This study is being designed with a comparator population of people without HAE, and we plan to have these results published in a manuscript when complete in early 2022. This research project is uniquely important to the HAEA community, as current data on HAE in Aging does not exist.
Finally, we are conducting a research study to validate a new Quality of Life tool for people with HAE. The aim of the study is to develop and validate a more broad-based HAE QoL instrument that more accurately depicts disease burden. Based on concepts derived from behavioral economics, this tool will be more sensitive than any that are currently being utilized. We believe that this cutting-edge project could revolutionize quality of life measurement of HAE and other chronic conditions.
US HAEA Healthcare Hero Recognition Program: Healthcare professionals who go out of their way to provide an extraordinary level of kind and compassionate care are helping to transform the health and well-being of individuals with HAE. These healthcare heroes deserve recognition for their consistent and positive impact on improving our quality of life.
The US HAEA has developed the HAEA Healthcare Hero Recognition Program to recognize and thank these healthcare professionals. This program allows members of the HAE community to acknowledge and thank the healthcare heroes who have provided them with exceptional care and made a lasting impact on their HAE diagnosis. These HAEA Healthcare Heroes will be recognized on our social media platforms, as well as receive a personalized award as a certificate of appreciation for their dedicated service to the HAE community.
So far, the US HAEA has recognized more than 15 healthcare professionals that go above and beyond to care for HAE community members and continues to accept submissions.
US HAEA Podcasts: The HAE Speaks Podcast features adults with HAE or their caregivers who speak about topics such as learning to come to terms with your diagnosis, mastering travel with HAE, how HAE can affect pregnancy, and gaining a sense of purpose through advocating for HAE. There are sixteen informative episodes of the HAE Speaks podcast.
The #BeyondHAE Podcast presents stories from the youngest members of our community. Young people with HAE can face a series of unique challenges when it comes to their diagnosis, so the HAEA has created the #BeyondHAE podcast to unite the youth community through shared experiences. Topics featured in the #BeyondHAE podcast include understanding anxiety and how it relates to HAE, facing the fear of needles, speaking to classmates about HAE, and creating a strong support system. There are thirty-one illuminating episodes of the #BeyondHAE podcast.
These podcasts are available on Spotify, Apple Podcasts, and many other platforms.
US HAEA Youth Programs: “Nico’s Story” is now available on the US HAEA Vimeo channel as a downloadable Audiobook. In the third book of the HAEA Children’s Book Series, Nico cannot wait to get on the plane and head to Washington, D.C. He and his family will join other HAE advocates for Capitol Hill Day. Nico is excited to visit Congress and talk about what it’s like to have HAE. Best of all, he will get to see his good friends, Jay and Kai. He has not seen them since the surprise visit to the lake house last summer. Will Nico make new friends at Capitol Hill Day? What will he discover when he explores the nation’s capital?
If you are interested in ordering a copy of “Nico’s Story” or any of the books in the HAEA Children’s book series, you can listen to the audiobooks on the US HAEA Vimeo channel (ushaea).
Breaking news: The Brady Club is now available to kids from member organizations from all around the world. The Brady Club is an online safe space customized for children diagnosed with HAE and their siblings (ages 3-13). The club is designed to help the youngest HAE patients to better understand, manage, and cope with their disease while offering fun ways for them to feel inspired, empowered, and connected to other kids who share their diagnosis and stories #BeyondHAE. The US HAEA partners with HAE UK, HAE Australasia, HAE Canada, HAE Spain, HAE South Africa, HAE Poland, and several countries in South America to provide access to the Brady Club material.
The first ACARE center has been registered in the USA: The Department of Asthma and Immunology at Penn State University in Hershey, Pennsylvania. You will find contact information at https://haei.org/location/acare-center-hershey-pa-usa.
