Prior to 2008, limited HAE treatment options were available in the United States. Now, people with HAE can choose from eight FDA-approved medications (and several generic icatibants) for managing their condition.

The availability of multiple on-demand and prophylaxis treatment options that can be administered at home has significantly increased the HAEA community’s quality of life while decreasing emergency room visits and hospitalizations. We are fortunate that many manufacturers continue to pursue innovative approaches to improving treatment efficacy and ease of administration.

Prophylactic treatment is an option for people who wish to try to reduce the frequency and/or severity of HAE attacks by taking medication on a regular schedule. This can be done on a long-term or short-term basis. Long-term prophylaxis is typically given regularly for weeks, months, or years in an effort to minimize the overall attack burden. Short-term prophylaxis is typically given just prior to a surgical or dental procedure to prevent an HAE attack during or following the procedure. People with HAE receiving prophylactic treatment still need an effective on-demand treatment plan in the event the prophylactic treatment is not 100% effective.

Acute attacks of HAE are unpredictable, disabling and can be life-threatening if the airway is affected. Quickly and effectively treating these attacks prevents complications and minimizes interference with everyday activities. The US HAEA Medical Advisory Board recommends that all people with HAE due to C1-Inhibitor deficiency should have access to at least two standard doses of a medication proven effective in treating HAE attacks.

Self and home administration can reduce the time to treatment and allows medication to be given earlier in an attack. Delays could allow an attack to become more severe and take longer to resolve once medication is finally received. Self and home treatment allows for greater independence and more reliable management of HAE symptoms.

Yes, many insurance companies are requiring information on the use and experience of HAE medications. The US HAEA Medical Advisory Board suggests that everyone with HAE keep a record of their prophylaxis and/or on-demand treatments. The documentation should include any attacks that may have occurred, the treatment response, and any possible medication side effects. The US HAEA offers a free app that makes it easy to record this type of information.