The Congresswoman’s “Recognize AGS Act” Would Direct HHS to Make Alpha-Gal Syndrome a Nationally Notifiable Disease

WASHINGTON, D.C. — U.S. Representatives Abigail Spanberger (D-VA-07) and Andrew R. Garbarino (R-NY-02) introduced bipartisan legislation to allow for greater monitoring and reporting of alpha-gal syndrome (AGS) cases by the Centers for Disease Control and Prevention (CDC).

Alpha-gal syndrome is a potentially life-threatening allergic condition often caused by the bite of a Lone Star Tick, which are common in Virginia. AGS symptoms occur after eating red meat or exposure to other products containing alpha-gal (galactose-α-1,3-galactose), a sugar molecule found in most mammals. Symptoms range from mild to severe or even life-threatening — including anaphylaxis, hives or itchy rash, nausea or vomiting, drop in blood pressure, and swelling of the lips, throat, tongue, or eyelids. According to a July 2023 report, the CDC now estimates that up to 450,000 people in the United States have AGS — up from an estimated 5,000 cases in 2013. Virginia is among the states with the highest prevalence of AGS cases, according to both the CDC and American College of Allergy, Asthma & Immunology.

The Spanberger-led Recognize AGS Act would direct the U.S. Secretary of Health and Human Services (HHS) to include AGS on the Nationally Notifiable Disease List to bolster coordination and surveillance efforts critical to treating and preventing AGS. While AGS is currently excluded from the Nationally Notifiable Disease List, other tick-borne diseases — like Lyme Disease, Anaplasmosis, and Babesiosis — are currently on the list.

“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 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.”

“Recent estimates of AGS are alarming,” said 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.”

Many Virginians living with alpha-gal syndrome, like Debbie Nichols and Candice Matthis, are looking for more answers about the prevalence and growth of the condition.

“Living with alpha-gal syndrome (AGS) is a daily challenge, and we are incredibly grateful for the work that Congresswoman Spanberger is doing to support the alpha-gal community,” said Debbie Nichols & Candice Matthis, Co-Founders, Two Alpha Gals. “The CDC has identified AGS as a growing threat to public health, and surveillance is a necessary first step to determine the true prevalence of AGS and to monitor trends in its growth and spread.”

The Recognize AGS Act is endorsed by Food Allergy Research & Education (FARE) and 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, Senior Vice President, Advocacy, FARE. “This is a bill whose time has come, and we encourage all House members to cosponsor it.”

”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, Tick-Borne Conditions United.

The CDC currently monitors more than 120 notifiable diseases and conditions at the national level through its National Notifiable Disease Surveillance System (NNDSS). The NNDSS is a nationwide CDC program that enables all levels of public health — local, state, territorial, federal, and international — to share health information to monitor, control, and prevent the occurrence and spread of state-reportable and nationally notifiable infectious and noncommunicable diseases and conditions.

Click here for bill text.

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