VeganMed
Dec 8, 2024
Patients with Alpha-gal Syndrome face delays, inaccuracies, and dead ends when seeking safe medication information from drug manufacturers
A new study presented at the 2024 ASHP Midyear Clinical Meeting exposes the persistent barriers patients with Alpha-gal Syndrome (AGS) face in obtaining accurate, timely ingredient information from drug manufacturers. The study, titled “Evaluating Drug Manufacturers’ Responses to Animal-Free Inquiries: A Nonsystematic Review of Accuracy, Response Time, and Impact on Patient Experience,” was conducted by a team of pharmacy researchers from the University of Connecticut, University of Arizona, and VeganMed, Inc.
“For patients with Alpha-gal Syndrome, every medication inquiry can be a matter of safety,” said Dr. Sachin A. Shah, PharmD, FACC, Co-founder and CEO of Pill Clarity. “Our findings show that getting clear answers from drug manufacturers is not only difficult — it’s often inaccurate.”
Study Highlights:
The research team contacted 123 global drug manufacturers to inquire about animal-derived and carrageenan-derived ingredients across 200 commonly prescribed medications.
Only 49% of manufacturers responded with an answer about animal-derived content after the initial outreach.
28% never responded, even after a second follow-up.
Of the companies that did respond, 6% provided incorrect information on animal-free status and 8.5% on carrageenan content, based on a cross-check with DailyMed listings.
On average, it took 5 (±4) business days for manufacturers to respond with a clear yes/no answer.
17 companies told patients to call instead of replying in writing, while others offered vague or redirected replies.
A total of 278 emails were exchanged for 123 inquiries — illustrating the burden placed on patients or caregivers to uncover basic ingredient details.
Why It Matters:
Alpha-gal Syndrome, a tick-borne allergic condition triggered by exposure to mammalian-derived substances, requires strict avoidance of certain excipients commonly found in medications, including gelatin, lactose, magnesium stearate, and carrageenan. Inaccurate or delayed responses from manufacturers can lead to severe allergic reactions, treatment delays, or loss of patient trust.
“This study highlights just how broken the system is when patients or even clinicians seek safe medications,” said Cora Altomari, study co-author and Medical Information Lead at VeganMed. “We need centralized, verified platforms that eliminate guesswork.”
The Solution:
Pill Clarity (www.pillclarity.org), founded by pharmacists, is a free national medical information platform that helps patients and clinicians identify medications that are free of mammalian- and carrageenan-derived ingredients. The organization is advocating for:
Standardized response letters from manufacturers
Ingredient-level transparency across all suppliers and formulations
Centralized, publicly accessible databases for excipient information
Dr. Shah added, “With over 33 million Americans impacted by food allergies, and AGS on the rise, transparency isn’t optional — it’s essential.”