From Jess Myers, Communication and Advocacy Specialist, US HAEA

US HAEA Advocacy Update: The US HAEA advocacy team has been hard at work this year to fight against harmful policies that prevent Americans with HAE from accessing their lifesaving medications.

Recently, there have been some exciting steps forward for HAE advocacy including:

  • On October 2nd, 2023, a US federal court struck down a rule that allowed health insurers to exclude certain types of charitable funding from counting towards insurance costs for patients. This court ruling will help to make HAE therapies more affordable for Americans with HAE.
  • In Ohio, HAEA advocates have been hard at work asking lawmakers to support a state bill that would reduce out-of-pocket costs in healthcare.
  • HAEA advocates in Connecticut, met with Senator Chris Murphy to ask for his support on two bills, the Safe Step Act and the HELP Copays Act, that would help people access affordable HAE treatments.

US HAEA Members Ally and Jasmeen Graduated from the HAEi LEAP Program:

US HAEA youth leaders, Ally Chacon and Jasmeen Aldaco, graduated as members of the first HAEi LEAP (Learn, Experience, Advocate, and Pave the way) program class earlier this year. HAEi LEAP is an educational program developed by HAEi that allows young people to learn new skills and develop as individuals and advocates.

During their time in the LEAP program, they completed a two-day training in Dubai and drafted valuable resources for the HAEA community. Ally crafted a caregivers guide, and Jasmeen created a youth advocacy guide.

>> Read more about Ally’s and Jasmeen’s projects and find a link to their guides.

HAEA Community Blog: The HAEA Community Blog is a platform that allows people with HAE to share their unique stories on a wide variety of topics ranging from emotional health, navigating insurance challenges, and journey to diagnosis and treatment. Click on the links below to read two recent blog posts.

>> Sheena Discusses her First-Time Experience at the 2023 US HAEA National Summit
>> Jasmine Finds Her Confidence through HAEA Advocacy and Youth Leadership

Advances in Research:

The US HAEA Scientific Registry: Hereditary Angioedema Demographics, Disease Severity, and Comorbidities: The US HAEA Medical Advisory Board has published a paper in the Annals of Allergy, Asthma and Immunology highlighting the importance of the AdvanceHAE Scientific Registry as a robust tool to learn about the natural history of HAE, as well as potential comorbidities that affected patients, may experience. With the addition of new members to the registry, we anticipate that the power of the Scientific Registry to address the natural history questions and treatment outcomes for HAE will expand.

>> Access to the publication is free and can be viewed here

HAE Caregiver Study: Most HAE research focuses on how individuals are affected by the condition, however, little attention has been paid to the impact on HAE caregivers. The US HAEA is initiating a study using real-world data on US caregivers for people with HAE, and our aim is to test and quantify the burden on caregivers for people with HAE, including monetary and non-monetary burden, socioeconomic burden, health economic cos, and the difference in burden when their loved one is on a modern prophylaxis medication. The HAEA launched the study with a pilot focus group and will continue the study with a survey of caregivers for people with HAE.  We will publish the results in 2024.

New CME for Healthcare Professionals: Educating the physician community in the latest HAE clinical care advances helps drive continued improvements in the health of people with HAE. That is why the HAEA produced and launched a new, free CME program for Medical Professionals – Updates in Hereditary Angioedema Care From the HAEA. The program is designed to meet the educational needs of healthcare professionals involved in the diagnosis and/or management of people with HAE. This CME provides physicians, nurses, or pharmacists the opportunity to earn free continuing medical education credits, and spread awareness on HAE and current treatment guidelines.

You can view the updated CME program on the HAEA website by going to haea.org, clicking on “Resources”, then “For Healthcare Professionals”, and finally “CME”.