NYS to track alpha-gal cases, the 'red-meat allergy' caused by lone star tick bites

New York will start tracking cases of alpha-gal syndrome, the potentially severe red meat allergy triggered by the bite of a lone star tick, state Health Commissioner Dr. James McDonald told Newsday.

In an interview, McDonald said the state is changing public health regulations to add alpha-gal to the list of reportable diseases that currently includes influenza and West Nile virus, as well as others transmitted by ticks such as Lyme, babesiosis, Rocky Mountain spotted fever and tularemia.

"What we at the state Health Department want to know about is prevalence," McDonald said. The reporting change is currently in the public comment period.

 Advocates, who noted more than a dozen states track alpha-gal cases, applauded the change.

"You can’t actually tackle a problem unless you understand the scope of the problem," said Sharon Forsyth, co-founder and executive director of the Alpha-gal Alliance Action Fund, a Washington, D.C.-based nonprofit. "And with alpha-gal syndrome, it has been chronically underestimated."

 Alpha-gal is the name of a sugar molecule that is found in some animals such as cows, pigs, lambs and goats as well as products from those animals like milk and gelatin. The sugar molecule is also found in the saliva of some ticks.

When some people are bitten by ticks, primarily the lone star tick, they can develop the allergy, which has symptoms ranging from rash, hives, diarrhea and vomiting to dizziness and severe anaphylaxis. Alpha-gal syndrome can be serious and life-threatening. The first documented fatal case was a 47-year-old New Jersey man who died in 2024 after consuming a hamburger and having a severe allergic reaction.

Because not every person who tests positive for alpha-gal in a blood exam actually develops the allergy, experts have debated whether a case count will accurately show a public health threat.

A 2023 report from the Centers for Disease Control and Prevention found Suffolk County, which is an epicenter for tick-borne diseases such as Lyme disease, also led the nation in suspected cases of alpha-gal between 2017 and 2022 with 3,746.

Nationally, the agency said more than 110,000 suspected cases were identified between 2010 and 2022, but as many as "450,000 people may be affected."

A diagnosis of alpha-gal syndrome should be made by an allergy specialist who looks at the blood test along with a medical history and exam, according to the state.

The agency also will look at claims from public and private health insurance companies.

"That will help us get another estimate of prevalence," McDonald said. "By doing this both ways, we’ll have a better idea."

Dr. Erin McGintee, an allergist and alpha-gal expert at ENT and Allergy Associates in Southampton, said she applauds the effort in trying to track cases in an accurate way but said using information from insurance forms also can be misleading.

"There is a lot of nuance to this," she said. "There really needs to be more education for providers on how to diagnose a case. People are still being diagnosed with alpha-gal even if they just have a positive blood test."

Activists, such as the Alpha-gal Alliance Action Fund, are pushing the Food and Drug Administration to designate alpha-gal as a major food allergen.

Forsyth said when she was diagnosed in 2019, there were thought to be about 5,000 cases in the United States. That has risen to over 450,000.

"Until we have these numbers, we can’t get the attention that we need," she said. "When we reach out to congressional offices, they want to know how much alpha-gal is in their state and they go to the state health department website, and they don't see any information about alpha-gal. They don't believe us when we say there are a lot of cases in their state."

Forsyth said 14 states will have reporting requirements when Oklahoma starts on Nov. 1.

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.