HAE patients want new preventive treatments, survey says
Clinicians may be underestimating burden of disease on patients
More than 90% of people with hereditary angioedema (HAE) are interested in trying new prophylactic (preventive) treatments, according to a recent poll.
The survey also highlighted disconnections between patients and clinicians, and their impressions of how well the disease is being managed.
The poll surveyed 150 adults living with HAE and 228 allergists/immunologists who treat people with HAE in the U.S. It was sponsored by Ionis Pharmaceuticals, which is developing a prophylactic HAE treatment called donidalorsen. Ionis has submitted an application to the U.S. Food and Drug Administration seeking the approval of donidalorsen. A decision is expected in August.
“These survey findings shed light on the holistic experience of living with HAE, as patients continue to experience painful and unpredictable attacks with a significant impact on their day-to-day lives, despite available treatments,” William Lumry, MD, a clinical professor of internal medicine at the University of Texas Southwestern Medical School, said in a press release from Ionis.
Most patients say they live in fear of experiencing HAE attack
HAE is a genetic disorder marked by recurrent swelling attacks that can affect different parts of the body. About two-thirds of the surveyed patients said they live in fear of experiencing an HAE attack at any time, and 72% said they make trade-offs in day-to-day life due to the risk of HAE attacks. Nearly 9 in 10 said they’d missed or avoided activities such as work, socialization, or travel because of HAE.
Prophylactic therapies are commonly used to reduce the risk of swelling attacks in HAE. The new poll found 91% of the patients are interested in trying new prophylactic treatments, with 65% saying they still haven’t found the best prophylaxis for them. Important factors for patients when considering potential prophylactic treatments for HAE included efficacy for preventing swelling attacks, the ability to give peace of mind, and being affordable and/or easy to access.
Most (85%) of the healthcare providers surveyed in the poll said they understand how much HAE impacts patients’ lives, yet 60% of the patients said they wished their healthcare providers understood the impact of the disease better. More than 60% of the patients said they wished their providers shared more information about new treatments for HAE, even though 90% of the clinicians said they often did so.
Further underscoring the disconnection between patients and clinicians, less than half (47%) of the patients said they tell their doctor every time they experience an HAE attack or symptom, regardless of severity. Nearly all of the patients said they’d experienced an attack in the preceding year, but about two-thirds of the doctors said their patients had experienced attacks in the past year.
“We see that patients may be hesitant to share the full extent of their disease burden with their doctor, and as a result [healthcare professionals] may be overestimating patients’ level of disease control,” Lumry said.
There are standardized tools that can be used to track HAE disease severity, but only about 1 in 3 patients reported using such tools at visits to their provider.
“In my practice, I’ve found that using a standardized questionnaire can help aid in these discussions, providing a simple way for patients to objectively evaluate and communicate their disease burden, and thus supporting more informed conversations about treatment considerations,” Lumry said.
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