Over 2018 and 2019, BioCryst Pharmaceuticals conducted two surveys to better understand the needs and expectations of hereditary angioedema (HAE) patients. Overall, they found that despite progress in HAE therapies, most patients still do experience attacks and expect to continue to experience them throughout the next year. Part of the issue is patient adherence to their treatment regime. For this reason, a greater research effort regarding new forms of therapy is important. We need to focus on types of treatment that will be compatible for patients.
For example, most patients say that an oral medication would be easier for them to manage. They explain that they are grateful for the prophylactic options they have (which are usually administered by injection or infusion), but express that oral options may increase compliance.
All survey participants had either type 1 or 2 hereditary angioedema. All responses were anonymous. 75 patients took the survey in 2018 and another 100 took the survey in 2019. 2 patients took the survey both years.
- 85% of patients took at least one preventative medication
- 89% of patients who said they used prophylaxis, used one (at least) of the 3 most common of these therapies.
- 3 months before the survey, patients taking Haegarda had a mean of .9 HAE attacks
- 3 months before the survey, patients taking Cinryze had a mean of 1.6 HAE attacks
- 3 months before the survey, patients taking Takhzyro had a mean of 1.8 HAE attacks
- 21% of patients who used prophylaxis said they expect to not have any more attacks in the next year
HAE attack rates were similar in the 2018 study as they were in the 2019 study for each respective medicine. But, in the 2018 survey, just 64% of patients took at least one preventative medication.
You can read more about this survey and its findings here.