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P209: Understanding Health Related Challenges in Patients with Alpha-Gal Syndrome

Poster Presenter

Jasmine Uchi

Director, Medical Affairs/Operations
VeganMed Inc.
United States

Objectives

To assess the medication and health products related challenges for patients with alpha-gal syndrome. Specifically, experiences regarding 1) allergic reactions 2) difficulty in finding alpha-gal safe products and 3) obtaining accurate information.

Method

Retrospectively reviewed anonymous data obtained from a market research survey. Fifteen questions were asked assessing patient experiences around medications and health products. Descriptive statistics were used to summarize the data.

Results

A total of 559 respondents diagnosed with alpha-gal syndrome completed the survey. Of these, 98.7% were located within the United States. The majority of respondents were over the age of 45 (76.2%) and identified as female (86.8%). The average time to receive an alpha-gal allergy diagnosis since the time of initial symptoms was 1.0 year. Almost all respondents (99.6%) reported having a reaction to food containing mammalian ingredients, while 75.8% reported having reacted to medications, 22.9% to vaccinations, 28.3% to dental/surgical products, and 23.8% to personal care products containing mammalian ingredients. Almost half of respondents (49.5%) reported having had an anaphylactic reaction as a result of alpha-gal containing health products. A majority of respondents (91.8%) reported having to modify their use of medications due to their AGS diagnosis. Additionally, 45.2% of respondents reported reaching out to drug manufacturers more than four times to determine if a product contained animal-derived ingredients. The difficulty of identifying alpha-gal free medications was rated as very difficult by 91% of the respondents. Quality of life was very much impacted for 75% of responders due to constantly looking up ingredient information. 89% reported being very worried about having a reaction to the food and medications they consume. Regarding trust in information sources about animal-derived ingredients in medications, 45.9% of respondents trusted an animal-free certification, while only 16.1% trusted drug manufacturers, 15.5% trusted pharmacists, and 3.3% trusted their doctor. Patients agreed (96.8%) on the need for pharmaceutical companies obtaining independent certification of animal-free products.

Conclusion

The survey indicates that AGS has a significant impact on the quality of life of patients, with the majority of respondents modifying their use of medications due to their diagnosis. The difficulty in identifying alpha-gal free medications and the need to constantly check ingredient information were reported as major issues that affect their quality of life. Additionally, most respondents did not trust drug manufacturers or healthcare providers regarding animal-derived ingredients in medications. The high percentage of respondents reporting extreme worry about having a reaction to the food and medications they consume further emphasizes the importance of addressing this issue. To address this issue, there is a need for greater awareness and education among healthcare providers about AGS, as well as the need for improved diagnostic tools and testing. The survey results also highlight the need for clearer and more accessible labeling of medications, as well as greater transparency from drug manufacturers about the presence of animal-derived ingredients. Pursuing animal-free certification is an opportunity for drug manufacturers to address the needs and preferences of individuals with AGS. The survey results provide valuable information that can be used to guide future research and initiatives aimed at improving the care and treatment of individuals with AGS. Improved solutions and education surrounding this condition are essential to improve patient outcomes and to address their concerns.