[Congressional Record Volume 169, Number 80 (Thursday, May 11, 2023)]
[Extensions of Remarks]
[Pages E427-E428]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




            RECOGNIZING HEREDITARY ANGIOEDEMA AWARENESS DAY

                                 ______
                                 

                        HON. GERALD E. CONNOLLY

                              of virginia

                    in the house of representatives

                         Thursday, May 11, 2023

  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. 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, 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.
  With significant improvements in care and outcomes, HAE patients now 
sometimes face arbitrary barriers to accessing care and therapies. Some 
of these barriers are related to a lack of information and awareness 
about rare disease experiences in general. Other barriers are related 
to problematic coverage policies, such as fail first protocols, access 
to copayment and charitable assistance, and prior authorization 
requirements. 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 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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