2022 HAEA Year in Review: Throughout 2022, the HAEA has continued to provide our 8,000 members with programs, services, and activities that engage and unite our community, and help people maintain the hard-fought access to and reimbursement for modern HAE medicines.

During the year, we developed and implemented a wide variety of new and exciting programs and resources and highlight a few below: 

  • The HAEA Round Table webinars and HAEA Community Blog facilitate communication among members so they can share challenges, successes, and lessons learned about HAE, 
  • The HAEA collaborated with HAE expert physicians to develop the Guide for Women with Hereditary Angioedema (HAE), an authoritative resource that includes frequently asked questions, stories from patients, and relevant source material to help women with HAE navigate every phase of their life. 
  • We introduced the new information-sharing and communications platform Voter Voice to enhance the capabilities and reach of our grassroots network. Voter Voice dramatically improves the network’s ability to engage with elected officials on public policy issues relevant to people with HAE. 
  • We continued to cultivate other valuable and effective services such as Meet and Greet events, Clinical Trial outreach, Advocacy and Awareness events, educational webinars, the HAE Speaks and #BeyondHAE podcasts, and the Pam King HAEA Scholarship Program. 

As we look towards the new year, the US HAEA remains steadfast in creating innovative solutions that fulfill our ongoing quest to help everyone with HAE lead a life that is unhindered by the condition. 

Original US HAEA Initiated Research Accepted for Poster Presentations at the 2023 Annual Meeting of the American Academy of Asthma, Allergy, and Immunology (AAAI):

The results of three HAEA-initiated research projects have been accepted for presentation at the February 2023 AAAAI meeting. 

1. Consequences of insurance coverage delays and denials for patients with HAE

Modern therapies have dramatically increased quality of life for people suffering from HAE. Nevertheless, insurance changes, delays, and denials are becoming more common. Twenty HAE patients (type 1 and 2) who recently experienced insurance delays or denials completed an online survey, and nineteen participated in a follow-up focus group. The survey and focus group addressed the impact of insurance challenges on the use of healthcare services, work/school attendance, and anxiety. Insurance delays and denials have significant impacts on individuals with HAE, including 1) increased urgent care and ER visits, 2) missed work/school days, 3) higher levels of anxiety, and 4) a negative impact on family life.

2. Comparison of Selected Health and Well Being Characteristics in Seniors with HAE and a Non-HAE Patient Matched Cohort 

HAE requires lifelong treatment, disease course, management, and outcomes are rarely reported in older populations. This study compared US adult HAE patients ≥60 years to a non-HAE patient-matched cohort. Prior research revealed significant QoL and mental health differences between adults with HAE and the general population. With the exception of activity impairment, these data show relatively minor and statistically insignificant differences among the two groups of seniors. These results are likely associated with the significant advances in HAE therapeutic options resulting in improved outcomes.

3. Critical Analysis Highlights Methodological Flaws in a Study Using Insurance Claims Data to Assess Cost Effectiveness of Prophylaxis Therapies for the Rare Disease HAE

In a 2021 pilot study updating an earlier analysis of HAE prophylaxis medicines, the Institute for Clinical and Economic Research (ICER) concluded that these therapies are far less cost-effective than previously estimated. We evaluated ICER’s methodology, including using and interpreting insurance claims data and the sources for utility values associated with Quality Adjusted Life Years (QALY) calculations. 

Fundamental flaws in the base-level attack rate and utility used to calculate QALYs raise serious questions regarding the validity of ICER’s methodology. 

2023 US HAEA National Summit: We are pleased to announce the 2023 US HAEA National Summit that will take place in Orlando, Florida, from 20 to 23 July 2023. The Summit theme is “Living Beyong Boundaries” and will bring the HAEA community together in person for the first time in three years. Our goal is to unite patients and caregivers, healthcare professionals, and industry partners once again for a transformative experience of learning and sharing.

The Summit will feature a highly relevant and engaging program that includes:

  • a Professional-Scientific Track and poster viewing session,
  • a Summer Youth Health Management and Advocacy Program,
  • Brady Club Programs for the very young members of our community,
  • General Sessions covering:
  • the latest information on HAE therapies,
  • treatments on the horizon,
  • results of HAEA advocacy research regarding insurance and other challenges,
  • grassroots legislative initiatives.

Registration will be open in January 2023 for residents of the United States, Puerto Rico, and the US Virgin Islands, so stay tuned for more details and make sure to Save the Date!