Recognizing Hereditary Angioedema Awareness Day

Floor Speech

Date: May 11, 2023
Location: Washington, DC


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.