C1-Inhibitor (C1INH) Personal Importation

Before considering the prohibitively expensive personal importation program, make sure you have exhausted all alternatives. There are currently five pharmaceutical companies conducting HAE clinical trials throughout the US. Most of them offer ongoing treatment after the first exposure to the medicine being tested. Call HAEA Clinical Programs Director, Donna Davis (808) 216-1029, or Michelle Williamson (972) 814-5205 to explore all options for participating in a clinical trial.

For patients who cannot get into a clinical trial, the HAE Association has set up a process that provides technical assistance to US HAE patients who have no other alternative and therefore must import C1INH concentrate.

The medical and scientific literature is unanimous in concluding that C1INH concentrate is the treatment of choice for abdominal and laryngeal HAE attacks. The concentrate and has been safely used by HAE patients in Western Europe and throughout the world for over 20 years.

Make sure you have a doctor willing to write a prescription and then administer the medicine. We have found that some physicians worry about liability issues related to products that are not approved by the US FDA, and are therefore reluctant to either prescribe or administer C1INH concentrate.

For more information on the HAE Association's C1INH concentrate personal importation program contact HAEA Clinical Programs Director, Donna Davis (808) 216-1029