ARLINGTON HEIGHTS, Ill. (April 5, 2023) – Hereditary angioedema (HAE) is a disease that, due to its rare nature, can pose difficulties for both patients and medical professionals. A new survey of allergists/immunologists from the American College of Allergy, Asthma and Immunology (ACAAI) shows that diagnosing, treating and managing this condition can be challenging for patients and healthcare providers – including patients in rural areas. An article about the survey is published in Annals of Allergy, Asthma and Immunology, ACAAI’s scientific journal.
HAE is caused by a genetic mutation, and there are different types. It is a hereditary disease. The symptoms of HAE include sudden swelling, most commonly in the limbs, face, intestinal tract, and airway. Swelling of the airway can be life-threatening. Allergists and immunologists are specialists who can help diagnose and treat HAE patients. Treatment of HAE involves both on-demand therapy, which is used to minimize the effects of an HAE attack, and prophylactic treatment, which is used in appropriate patients to reduce the frequency and severity of attacks.
The survey was conducted by The Harris Poll on behalf of ACAAI. Survey participants were recruited by email from ACAAI’s member mailing list. A total of 2,996 members were contacted and asked to complete an online survey. To be eligible for the survey, participants had to be an association member (physician or allied health professional) in the United States who was currently practicing allergy or immunology and seeing or treating at least one patient with HAE each year. The 138 members who responded saw an average of nine patients with HAE yearly. Due to the small sample size across urbanicity (n<100), results should be interpreted as directional only.
“More than a tenth (12%) of the allergist/immunologist respondents had patients who lived in rural areas,” said allergist J. Allen Meadows, MD, ACAAI past president and corresponding author of the article. “It is significant that respondents with HAE patients living in rural areas (compared with urban or suburban) were more likely to say half or more must travel an hour or more to get to their practice – highlighting a potential barrier to care,” said Dr. Meadows.
Other findings of the survey included:
- Misdiagnosis was among the top challenges reported (82%) for diagnosing HAE patients. According to ACAAI, although genetic testing is available, it does not test for all known variants.
- Other challenges inherent to the treatment of HAE are economic ones. Inability of patients to afford treatment, such as medications, was among the top challenges of treating HAE patients (76%), and 62% of the respondents discussed the cost of care with their patients at about half or more visits.
- Nearly two-thirds of respondents (64%) agreed that patients with government insurance coverage are at a disadvantage since it is not accepted by specialists who treat HAE. They also reported that better payments for drugs from Medicaid and Medicare (57%) and better payments to providers from Medicaid and Medicare (49%) could improve support for treatment of patients in rural settings.
- A majority of respondents (86%) have been using telehealth appointments at least occasionally since the COVID-19 pandemic began, and more than 2 in 5 (45%) thought that changing federal telehealth rules to allow more people to use these services, without the current onerous requirements, could better support the treatment of patients living in rural areas.
The authors of the paper urged the following calls to action:
- Universal availability of more accurate and rapid testing.
- Equity in payments for doctor and hospital services for people with Medicare and Medicaid who live in rural areas.
- Permanent expansion of telehealth services.
- Better awareness of and education about this rare disease
In conclusion, the authors state, “Awareness and education remain a great need for all rare diseases. Fifty percent of our respondents agreed that patient education and support groups could better support the treatment of patients in rural settings. We applaud our fellow providers for their efforts to educate patients with HAE and their families.”
The full article can be found in Annals of Allergy, Asthma and Immunology , the scientific journal of the American College of Allergy, Asthma and Immunology. Takeda Pharmaceuticals USA, Inc. provided support in writing and editing of this manuscript through an independent medical education grant.
About ACAAI
ACAAI is a professional medical organization of more than 6,000 allergists-immunologists and allied health professionals, headquartered in Arlington Heights, Ill. The College fosters a culture of collaboration and congeniality in which its members work together and with others toward the common goals of patient care, education, advocacy, and research. ACAAI allergists are board-certified physicians trained to diagnose allergies and asthma, administer immunotherapy, and provide patients with the best treatment outcomes. For more information and to find relief, visit AllergyandAsthmaRelief.org. Join us on Facebook, Pinterest and Twitter.
Research Method
The research was conducted online in the United States by The Harris Poll on behalf of the American College of Allergy, Asthma and Immunology among 138 ACAAI Members (Physician Members, Fellows, and Allied Health Professionals [(Nurse Practitioner/Physician Assistant]) in the US who are currently practicing allergy/immunology and see/treat at least one patient with hereditary angioedema (HAE) each year. Members were recruited from ACAAI’s Member Mailing List. The survey was conducted April 13 – May 3, 2022.
Raw data were not weighted and are therefore only representative of the individuals who completed the survey.
Respondents for this survey were selected from among those who have agreed to participate in our surveys. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data is accurate to within + 8.2 percentage points using a 95% confidence level. This credible interval will be wider among subsets of the surveyed population of interest. All sample surveys and polls, whether or not they use probability sampling, are subject to other multiple sources of error which are most often not possible to quantify or estimate, including, but not limited to coverage error, error associated with nonresponse, error associated with question wording and response options, and post-survey weighting and adjustments.
