In brief

  • Name for organization: US Hereditary Angioedema Association
  • 10,000 members in total at 1 Jan 2021 (the association registration is pending), 103 members in Puerto Rico
  • Name of approved HAE treatments:
    • Berinert
    • Cinryze
    • Firazyr
    • Kalbitor
    • Ruconest
    • Takhzyro

Fun or interesting things about Puerto Rico

  1. Puerto Rico is an unincorporated territory of the United States.
  2. The currency used in Puerto Rico is the U.S. dollar.
  3. El Yunque is the only rainforest in the U.S. Forest System and is in Puerto Rico. The forest receives over 120 inches of rain every year.
  4. It’s main tourist attractions are the local food, the crystalline white beaches, and Old San Juan, a city with its buildings from the Spanish period, including El Morro and San Cristobal forts that protected Puerto Rico from ship attacks in the middle of the last century.

What positive changes have happened for people with HAE, in your country, from 2012 to now?

The positive changes that have happened for people with HAE in the United States, from 2012 to now:

  1. People with HAE now have access to 8 FDA approved medicines including the recently approved (December 2020) oral kallikrein inhibitor. In Puerto Rico, 6 out of 8 therapies are available to patients.
  2. Establishing the US HAEA Angioedema Center at University of California at San Diego, an institution dedicated to in depth research and establishing a best practice for HAE care in the United States and Puerto Rico.
  3. Establishing the Pam King HAEA Scholarship Program for people with HAE to pursue higher education.

HAEA Supported Publications in Peer Reviewed Medical Journals

  • HAEA / HAEi Health Economics Study. Demonstrating the high cost and quality of life burden of HAE treatment with on-demand only therapy and the quality of life value of new subcutaneous HAE preventive medicines.
  • Hereditary Angioedema Primer. 14 peer reviewed articles on vitally important HAE topics.
  • US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema. Provide the US medical community with a comprehensive scientific overview of HAE in all its forms (Type I, Type II, and HAE with Normal C1-Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach.
  • US HAEA and Angioedema Center at UCSD Study of COVID-19 (1,400 participants – submitted to a peer reviewed medical journal ). 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.
  • 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 their prescribing physicians obtain insurance reimbursement for HAE medicines. We conducted surveys among 1) people with HAE, and 2) insurance specialists in physicians’ offices who file HAE medicine insurance claims. We also queried health insurance providers to better understand their perspectives on covering HAE medicines.

The HAEA is sending guidebooks to people with HAE and physicians to help navigate the complex insurance process.

  • 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. Scientists at the US HAEA Angioedema Center at UCSD continue to search for genetic causes and biomarkers that define HAE with Normal C1-Inhibitor. In addition, we now have in-house testing for 5 genes that are believed to be implicated.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

The biggest achievement for people with HAE in the USA and Puerto Rico is the approval of 8 different self-administered HAE therapies for prevention and treatment of attacks.

The US HAEA is more committed than ever to the fundamental principle that has always guided us — helping every HAE patient lead a life that is unhindered by HAE. As an HAE community, we have made great strides in the past 10 years, but vitally important work remains. Going forward we must protect access to the currently available HAE therapies, while pushing for research that brings even better treatment options  to our children and future generations.

What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?

  1. US HAEA Patient Summit events.
  2. The Brady Club – An international kids club for young people with HAE and their siblings.
  3. HAEA Children’s Book Series and interactive quarterly activity books.
  4. Creation of the US HAEA Angioedema Center at UCSD in San Diego.
  5. HAEA Treatment Education Series Webinars.
  6. The Pam King HAEA Scholarship Program.
  7. Capitol Hill Day.
  8. Advocating for bills among Puerto Rico legislators that benefit the HAE community in Puerto Rico.
  9. Created Support Groups to help people with HAE deal with emotional and physical issues.
  10. Successful recruitment for 7 Clinical Trials.
  11. Market Research.
  12. HAEA Meet & Greet events.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

  1. Collaboration with the HAEi Youngster Community and Brady Club.
  2. Included the HAEi Leaders in the 2019 US HAEA National Summit.
  3. Active participant in Global Conference.
  4. Social Media cross-collaboration.
  5. HAEi will present the Global Perspective on Medicine Access at the US HAEA 2021 Virtual Summit Series.
  6. The HAEi RPA for Puerto Rico has been helping, together with physicians, to secure the approval of laws that will help patients without private health plans to access treatment.

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

By 2030, we want people with HAE to have unrestricted access to available modern HAE therapies so they can experience life to the fullest and effectively manage their HAE. We want people with HAE to continue benefiting from the HAEA’s innovative programs and services. We will also expand our outreach, awareness and educational initiatives to narrow the gap between symptoms and proper diagnoses for people with HAE. Ultimately, we will continue to pursue a cure!



US HAEA Puerto Rico event HAE IN MOTION

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