Garbarino, Spanberger Introduce Legislation To Better Monitor Tick-Born Illness That Triggers Red Meat Allergy

WASHINGTON, D.C. - Today, Congressman Andrew R. Garbarino (R-NY-02) and Congresswoman Abigail Spanberger (D-VA-07) announce the introduction of the bipartisan Recognize AGS Act which would allow for greater monitoring and reporting of instances of Alpha Gal Syndrome (AGS) by the Center for Disease Control (CDC). Representatives Glenn Thompson (R-PA-16) and Eleanor Holmes Norton (D-DC) also cosponsored this legislation.

AGS is a serious, potentially life-threatening allergic condition associated with bites from the Lone Star Tick. AGS symptoms occur after people eat red meat or are exposed to other products containing alpha-gal (galactose-α-1,3-galactose), a sugar molecule found in most mammals. Counties within New York and Virginia have been identified by the CDC as having the highest number of suspected cases of AGS nationwide.

"Recent estimates of AGS are alarming," said Rep. Garbarino. "According to the CDC, about 4% of AGS cases in the United States are found in Suffolk County, making eastern Long Island an epicenter for this disease. This bill would represent an important step towards increasing national awareness of AGS and helping those on Long Island and elsewhere stay healthy."

“We often hear stories of Americans learning the hard way that they have contracted Alpha-Gal Syndrome — like a family dinner turning into a trip to the emergency room,” said Rep. Spanberger. “As this condition affects more and more Americans, Virginians are contending with AGS at some of the highest rates. Including Alpha-Gal Syndrome on the nationally notifiable disease list is a real step to help public health professionals monitor this condition and keep Americans healthy.”

On July 27, 2023, the CDC released an updated report about the prevalence of AGS in the United States. Originally estimated at 5,000 cases in 2013, the CDC now estimates that up to 450,000 people in the US have AGS. Suffolk County, New York leads the nation in tick-caused meat allergy. The report also shows that AGS is spreading most rapidly across southern, midwestern, and mid-Atlantic states.

The CDC monitors about 120 notifiable diseases and conditions at the national level through its National Notifiable Disease Surveillance System (NNDSS). The nationally notifiable diseases and conditions lists recommended diseases and conditions to be made legally reportable under state or local law.

Following standard case definitions, this case surveillance captures information that public health officials can use. In 2021, the Council of State and Territorial Epidemiologists (CSTE) approved a position statement standardizing a case definition for AGS for surveillance purposes. Certain tick-borne diseases, like Lyme Disease, Anaplasmosis, and Babesiosis are currently monitored. However, AGS is still not currently a nationally notifiable condition. This legislation would require the CDC to take such steps as may be necessary to include AGS on the list of NNDSS.

The Recognize AGS Act is endorsed by Tick-Borne Conditions United and Food Allergy Research & Education (FARE).

"We are thrilled to learn about the Recognize AGS Act and hope that the CDC and the States can work together to get the most effective data for the least administrative burden. We have a desperate need to track the extent and spread of this preventable condition that is life-changing and is causing extraordinary costs to the US health care system," said Beth Carrison, Director of Advocacy for Tick-Borne Conditions United.

“Alpha-gal Syndrome is a difficult and potentially deadly disease impacting upwards of a half-million Americans, making them allergic to red meat and products from mammals. FARE, the nation’s largest food allergy advocacy non-profit, is grateful to Rep. Andrew Garbarino and Rep. Abigail Spanberger for their leadership in understanding the challenges faced by the Alpha-gal community and we strongly support their legislation to require the CDC to include Alpha-gal syndrome on its list of nationally notifiable diseases,” said Jason Linde, FARE’s Senior Vice President, Advocacy. “This is a bill whose time has come, and we encourage all House members to cosponsor it.”

The full text of the legislation can be found here.

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