Alpha-gal in health products triggers anaphylaxis in half of alpha-gal syndrome patients

Key takeaways:

• 91.8% of patients have modified their use of health products due to their alpha-gal syndrome.
• 18.1% of patients have contacted drug manufacturers to ask about ingredients 12 times or more.

Nearly half of patients with alpha-gal syndrome have had an anaphylactic reaction to health products that include alpha gal, according to a study presented at the DIA 2023 Annual Global Meeting in Boston.

These results and others emphasize the potential life-threatening nature of alpha-gal syndrome without transparent ingredient labeling, Jasmine Uchi, PharmD, director of medical affairs and operations at VeganMed Inc., said in the study.

The study began with a simple observation on social media, Uchi told Healio.

“There are over a hundred support groups out there, with daily activity on their struggles around their condition, understanding products and labels in both food and health products, and a broken diagnosis system,” Uchi said. “A systematic approach to understand the disease burden was needed.”

Jasmine Uchi

The researchers retrospectively reviewed anonymous data obtained through a market research survey of 559 patients (mean age, 52.1 years ± 10.9; 86.8% female) diagnosed with alpha-gal syndrome with an average time to diagnosis of 1 year ± 6.3 years.

The survey, which was conducted via social media platforms and word of mouth, asked 15 questions about patient experiences with medication and health products.

Specifically, 49.6% said they have had an anaphylactic reaction after using a health product that includes alpha gal. Also, 91.8% said they have had to modify their use of medication because of their alpha-gal syndrome diagnosis.

When asked if they had ever reached out to drug manufacturers to find out if products include animal-derived ingredients, 25% of the respondents said they had never done so, 29.7% said they had done so one to three times, 21.3% said they had four to seven times, 5.9% had eight to 11 times and 18.1% had 12 times or more.

Percentages of respondents who had reacted to ingredients or products derived from mammals included 99.6% for food, 75.8% for medications, 28.3% for dental or surgical supplies, 23.8% for personal care products and 22.9% for vaccinations.

Respondents were asked to rate the relationship between alpha-gal syndrome and their quality of life as well. They scored the difficulty of identifying medications free of alpha gal at 4.6 ± 0.7 on a 5-point scale, with 1 indicating very easy and 5 indicating extremely difficult.

Also on a 5-point scale, with 1 indicating not at all and 5 indicating extremely, respondents rated the impact that constantly looking up ingredient information on their quality of life at 4.2 ± 1 and worrying about having a reaction at 4.5 ± 0.7.

“The above results of 92% having to modify their medications and the scores impacting the patient quality of life call for a serious attention to the needs of this patient population from both the general public and health care stakeholders,” Uchi said.

The researchers noted that American Medical Association Policy H-100.947 calls for labels to include all animal-derived ingredients and encourages health care providers to be aware of patient preferences regarding these ingredients in medical products.

Also, the researchers said manufacturers should independently declare animal-derived ingredients in their products or use external certification platforms.

The researchers further said that 96.8% of the respondents agreed that pharmaceutical companies should obtain independent certification of animal-free products. Additionally, 50% said they would trust animal-free certification, 12% would trust drug manufacturers and 11% would trust pharmacists.

The researchers called for further studies to promote the representation of diverse patient populations in medication labeling. These studies would include alpha-gal content in medications with ingredients derived from mammals, the researchers continued, which is not well studied but still a significant concern and burden for patients.

“The next step in this research is addressing these patients’ needs,” Uchi said. “It is time to put into practice the AMA policy (Policy H-100.947) on transparency around animal-derived ingredients in labels.”

Meanwhile, Uchi said, doctors can recognize the role of mammalian ingredients in medications in patient management.

“Reach out to resources like VeganMed, pharmacists, compounding pharmacies and the manufacturer to address patient concerns,” Uchi said.

For more information:

Jasmine Uchi, PharmD, can be reached at jasmine@veganmed.org.