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Cover of ICD-10-2022 The Complete Official Codebook with white sans-serif type in upper left on dark orange background with news icon

Alpha-gal Syndrome ICD-10-CM: Z91.014

Z91.014 – Allergy to mammalian meats

Until recently, healthcare providers didn’t have a designated medical diagnosis (ICD-10-CM) code available to track the rapidly growing allergy to sugar molecule galactose alpha-1, 3 galactose, otherwise known as Alpha-gal Syndrome (AGS).

To address this problem, the Alpha-gal Syndrome Subcommittee of the Tick-borne Disease Working Group (on which TBCU CoFounder Beth Carrison served as Patient Advocate Representative) made the recommendation to update the diagnostic code.

Cover of 2020 Tick Borne Disease Working Group 2nd Report

As recommended in the Tick-borne Disease Working Group 2020 Report to Congress:

“To overcome diagnostic challenges, advances in diagnostic tools are needed to further evaluate the prevalence of alpha-gal-specific antibodies in humans. In addition, the assignment of a diagnosis code for alpha-gal would help accumulate more accurate prevalence data (Z91.018, allergy to other foods, is the currently used ICD 10 code).”

Due in part to extensive advocacy by the AGS patient community and the subsequent Working Group’s recommendation, in October 2021 the National Center for Health Statistics, (NCHS, the federal agency that maintains the ICD database) released the new code, Z91.014 – Allergy to mammalian meat.

While the new code is a step in the right direction for tracking patients diagnosed with AGS, “Allergy to mammalian meats” does not clearly capture the meaning and intent behind the original recommendations of the Working Group and other stakeholders.

TBC United is concerned it will be difficult for healthcare providers to easily, and accurately record Alpha-gal Syndrome, a carbohydrate allergy (versus all other documented meat allergies, which are protein-based). TBCUnited will provide follow-up commentary to the NCHS on this matter.

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Beth Carrison has 30+ years of experience in business development and healthcare patient advocacy. Since 1996, she has managed over 30 different food allergies within her family unit; in addtion, two family members were diagnosed multiple times with Lyme Disease. Being diagnosed herself with two tick-borne conditions – Lyme Disease and Alpha-gal Syndrome (also known as the “Red Meat Allergy” or “Mammalian Meat Allergy”) unfortunately gave Ms. Carrison a firsthand perspective on both tick-borne conditions and anaphylaxis. Since her diagnosis, she has passionately given her time to others in the Alpha-gal community thorough individual connections and numerous speaking engagements across the country.

In 2018, Ms. Carrison co-founded Tick-Borne Conditions United (TBC United), with Dr. Jennifer Platt. In 2019 Ms. Carrison was appointed as a patient advocate to the federal 2020 Alpha-gal Syndrome Subcommittee, which serves the federal Tick-Borne Disease Working Group (TBDWG) under the Department of Health and Human Services (HHS). Ms. Carrison encourages everyone to join at least one community organization and volunteer their time and talents whenever possible.

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