Federal testing data identify Suffolk County, New York, as having more suspected alpha-gal syndrome cases than any other county in the country, and the state health department still cannot say how many New Yorkers have the condition. Legislation that would change that cleared the Assembly in late May and the Senate on June 1, and it has not yet been signed into law.
The gap matters to families on Long Island in a way that is easy to miss. Alpha-gal syndrome is an allergy to a sugar molecule found in beef, pork, lamb, venison and many dairy products, and it can develop after a bite from a Lone Star tick. Reactions typically arrive two to six hours after eating, which is long enough that most people never connect the meal to the illness.
Without mandatory reporting, the state has no map of where cases are rising, and clinicians outside known hot spots have little reason to suspect the diagnosis. Patients absorb that cost directly through repeated emergency visits, months of unexplained hives or stomach pain, and in the most serious cases, anaphylaxis that no one has warned them to prepare for.
The Bill Passed and Then Stopped
Senate bill S10340, sponsored by Sen. Rachel May, and its Assembly companion A11328, carried by Assemblymember Tommy John Schiavoni, would require the health commissioner to establish alpha-gal syndrome as a reportable condition and to add it to the state tick-borne disease surveillance report. The Assembly passed the measure unanimously on May 28. The Senate passed it 60 to 0 on June 1. The public status listing shows the bill has passed both chambers but has not been delivered to the governor or signed.
If enacted, the law would take effect 180 days later, meaning statewide reporting would begin well after the 2026 tick season ends. The sponsor memo puts the fiscal impact on the state at none.
Schiavoni, whose district covers eastern Long Island, said in a statement that Suffolk County providers and tick-borne disease experts "have long sounded the alarm on the effects of illnesses" such as alpha-gal syndrome. Assemblymember Amy Paulin, in the same release, said delays in diagnosis prolong both suffering and risk, and that better reporting would raise awareness among residents and providers alike. May said the condition has no known treatment and is not currently in the state's reportable disease registry.
Until the bill is signed and regulations are written, the current situation stands. The state health department's own guidance for clinicians states plainly that alpha-gal laboratory testing is reportable in New York City but is not currently reportable elsewhere in New York State.
Long Island Carries the Burden
New York City added laboratory-confirmed alpha-gal syndrome to its list of reportable conditions when the Board of Health amended Article 11 of the city Health Code at its meeting on Oct. 24, 2023, specifically so the department could conduct more effective and complete disease surveillance. That is why the city has numbers, and the state does not.
The irony is geographic. The Lone Star tick is established on Long Island and in parts of the city, and the state's own clinician guidance says most cases outside New York City are in Nassau and Suffolk counties. Suffolk residents are the population most affected and the population least counted.
Federal analysis of commercial laboratory testing gives a sense of scale. A CDC review of alpha-gal specific IgE testing covering 2017 through 2022 found 90,018 people with a positive result nationally out of 295,400 tested. Suspected cases clustered in southern, midwestern and mid-Atlantic counties, and Suffolk County recorded the highest number of any county, with 3,746 suspected cases. The bill's sponsor memo cites the same federal work in estimating that between 3,800 and 18,000 Suffolk County residents may have the syndrome.
A separate figure often repeated in coverage needs care. The CDC has estimated that up to 450,000 people in the United States were affected as of 2022, a number that reflects presumed underdiagnosis rather than counted cases. It did not come from the agency's newer work. A CDC seroprevalence study using blood donor samples tested 3,000 residual samples from 10 states and found an estimated 24.0 percent seroprevalence in the five states with the highest rates. New York was not among the 10 states sampled.
A positive antibody test is also not the same as a diagnosis. Patients can carry the antibody without reacting to food, which is one reason both the CDC and the state advise against routine screening or including alpha-gal in a broad tick panel. Diagnosis requires history, examination, and a positive test together.
Household Decisions the Data Gap Complicates
For a family in Riverhead or Southampton, the absence of state counts changes three ordinary decisions. It affects whether a local urgent care clinician thinks of alpha-gal when a child breaks out in hives at midnight after a barbecue. It affects whether school nurses and camp staff are trained to recognize a delayed reaction. And it affects whether health departments direct tick prevention messaging to the neighborhoods where risk is actually concentrated.
Prevention remains the same regardless of surveillance status. Long pants and permethrin-treated clothing in wooded or tall-grass areas, repellent on exposed skin, a full-body tick check within a couple of hours of coming indoors, and prompt removal of any attached tick all reduce bite risk. Nymphal Lone Star ticks are roughly the size of a poppy seed and are frequently missed.
Symptoms and the Delay That Hides Them
Reactions can include hives, itching, swelling of the lips, throat, tongue or eyelids, nausea, vomiting, diarrhea, heartburn, severe stomach pain, cough, wheezing, shortness of breath, dizziness and a drop in blood pressure. Because the reaction is delayed, people often blame a stomach bug or an unrelated food.
Anyone with breathing difficulty, throat swelling, fainting or a rapidly spreading rash needs emergency care. Milder recurring symptoms after meals containing beef, pork, lamb or dairy warrant a conversation with a clinician and possible referral to an allergist familiar with the condition. No one should stop eating entire food groups or start carrying epinephrine on the basis of a suspicion alone.
The governor's office has not announced a decision on the bill. If it is signed this year, reporting would begin roughly six months later, and the first meaningful state case counts would not appear until the 2027 tick season. MedicalDaily will report the outcome.
Key Questions Answered
Is alpha-gal syndrome reportable in New York now? Not statewide. Laboratory testing is reportable in New York City only. A bill requiring statewide reporting passed the Assembly in late May and the Senate on June 1 but has not been signed into law.
What is alpha-gal syndrome? An allergy to a sugar molecule found in mammalian meat and many mammal-derived products, which can develop after a bite from a lone star tick. Reactions are typically delayed by two to six hours.
Which parts of New York face the highest risk? Suffolk and Nassau counties on Long Island, where the Lone Star tick is established. Federal testing data identified Suffolk County with the most suspected cases of any county nationally.
What symptoms should people watch for? Hives, swelling, stomach pain, vomiting, diarrhea, shortness of breath and dizziness, usually several hours after eating beef, pork, lamb or dairy. Breathing difficulty or throat swelling requires emergency care.
Should people get tested for alpha-gal? The CDC and the state health department do not recommend routine screening or including alpha-gal in a broad tick panel. Testing should follow a clinical history suggestive of the condition, and a positive antibody test alone is not a diagnosis.
How can families reduce the risk of a Lone Star tick bite? Long pants and treated clothing in wooded or grassy areas, repellent on exposed skin, full-body tick checks after being outdoors, and prompt removal of attached ticks.
When would statewide reporting actually start? The bill takes effect 180 days after it becomes law. If signed in 2026, the first useful statewide counts would likely not appear until the 2027 tick season.
