[Congressional Record Volume 170, Number 89 (Wednesday, May 22, 2024)]
[Extensions of Remarks]
[Page E546]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 RECOGNIZING HEREDITARY ANGIOEDEMA DAY AND THE HAEA'S 25TH ANNIVERSARY

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                        HON. GERALD E. CONNOLLY

                              of virginia

                    in the house of representatives

                        Wednesday, May 22, 2024

  Mr. CONNOLLY. Mr. Speaker, I rise today to recognize May 16th as 
Hereditary Angioedema Awareness Day and to call attention to challenges 
and opportunities faced by this patient community. Hereditary 
Angioedema (HAE) is a rare, severe, and potentially life-threatening 
genetic condition in about 1 in 10,000 to 1 in 50,000 people. HAE 
symptoms include painful and disabling episodes of edema, or swelling, 
in all body parts including the abdomen. Throat swelling can close the 
airway and cause death by asphyxiation. While minor trauma or stress 
may trigger an attack, swelling often occurs without a known trigger. 
Symptoms of hereditary angioedema typically begin in childhood and 
worsen during puberty. Untreated individuals may have an attack every 1 
to 2 weeks with most episodes lasting 3 to 4 days.
  HAE used to be associated with an incredibly high mortality rate, but 
recent breakthroughs in medical science have taken the condition from a 
death sentence to a manageable chronic illness. With the advent of 
innovative therapies, HAE patients no longer experience disability and 
dependency, but rather live full, productive, and largely suffering-
free lives. HAE affected individuals require near constant access to 
life-saving care and medication and additional research advancements 
are needed to sustain progress toward an elusive cure.
  Loss of productivity at work and school is one of the many side 
effects of those suffering from HAE, particularly when it is not 
managed correctly and comprehensively. In an earlier survey conducted 
by the U.S. Hereditary Angioedema Association (HAEA), 57 percent of 
patients reported as not having equal advancement in career pathways 
and 48 percent stated they did not achieve the educational level that 
they wanted. I look forward to working with my colleagues to continue 
to improve coverage and access and lowering out-of-pocket costs for 
patients with rare and chronic illnesses.
  I am also proud to recognize the HAEA. This organization is 
celebrating its 25th anniversary and the tremendous advancement in 
research and patient care improvements over that time. They are an 
exemplary patient research advocacy organization in terms of support 
for the community and impact for the patients they serve.
  I call on my colleagues to continue to support efforts to advance 
medical research, improve coverage and access, enhance patient care, 
and join me in recognizing May 16th as Hereditary Angioedema Awareness 
Day.

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