HB5127 104TH GENERAL ASSEMBLY

LRB104 19510 BDA 32958 b

104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
HB5127

Introduced 2/10/2026, by Rep. Dan Swanson

SYNOPSIS AS INTRODUCED:

New Act

Creates the Alpha-Gal Syndrome Reporting Act. Directs the Department of Public Health to adopt rules to track cases of alpha-gal syndrome within counties and statewide. Requires medical reporters to report diagnosed cases of alpha-gal syndrome to the Department. Provides that State reporting and tracking of cases of alpha-gal syndrome shall be independent from or concurrent with federal reporting or tracking, and that the Department has the duty to independently track cases in consultation and coordination with federal agencies. Directs the Department to adopt rules requiring a report of alpha-gal syndrome for an alpha-gal immunoglobulin E level of 0.1 kilounits per liter as a suspected case of alpha-gal syndrome through an electronic laboratory reporting system. Directs the Department to follow up on reported suspected cases. Directs the Department to submit an annual report to the Centers for Disease Control and Prevention and to publish the results of the tracking of cases of alpha-gal syndrome on the Department's website. Makes findings. Defines terms.

A BILL FOR

AN ACT concerning health.

Be it enacted by the People of the State of Illinois, represented in the General Assembly:

Section 1. Short title. This Act may be cited as the Alpha-Gal Syndrome Reporting Act.

Section 5. Findings. The General Assembly finds the following:

(1) Alpha-gal syndrome is a vector-borne disease that is caused by tick bites.

(2) Alpha-gal syndrome is characterized by the development of immunoglobulin E antibodies to galactose-alpha-1,3-galactose (alpha-gal), a carbohydrate found in all mammals except some primates.

(3) Individuals with alpha-gal syndrome may experience allergic reactions after being exposed to mammalian meat and other mammal-derived products and products with ingredients derived from mammals, including foods, drugs, and other products. Farmers and ranchers may also react to livestock exposures.

(4) Alpha-gal syndrome is an unusually severe allergy that is often life-altering and sometimes fatal.

(5) Data previously shared by the Centers for Disease Control and Prevention showed that approximately 90% of persons with a positive test result had clinical symptoms consistent with alpha-gal syndrome and that they were classified as having confirmed alpha-gal syndrome.

(6) The Centers for Disease Control and Prevention has identified alpha-gal syndrome as an emerging public health concern and has identified state-level surveillance of alpha-gal syndrome as a public health need.

(7) The Centers for Disease Control and Prevention has identified Illinois as a state with one of the highest estimated prevalences of alpha-gal syndrome in the United States.

Section 10. Definitions. As used in this Act:

"Alpha-gal syndrome" means an acquired allergic condition and vector-borne disease caused by tick bites in which an individual develops immunoglobulin E, antibodies to galactose-alpha-1,3-galactose (alpha-gal), resulting in allergic reactions after exposure to mammalian meat, other products derived from mammals, and products containing mammal-derived ingredients or carrageenan.

"Clinical laboratory" or "laboratory" means a facility that performs laboratory tests or issues reports resulting from such tests and that is certified under the Clinical Laboratory Improvement Amendments of 1988.

"Confirmed alpha-gal syndrome case" means a person who meets the clinical criteria or case surveillance definition for alpha-gal syndrome and has confirmatory laboratory evidence (serum or plasma immunoglobulin E to alpha-gal of at least 0.1 international unit per milliliter or 0.1 kU/L).

"Department" means the Department of Public Health.

"Diagnosed" means identified as having alpha-gal syndrome, either clinically or with laboratory testing confirmation, by:

(1) a physician licensed to practice medicine in all its branches;

(2) a person otherwise permitted to diagnose alpha-gal syndrome by applicable laws; or

(3) another appropriately licensed person under the supervision of or in collaboration with a physician licensed to practice medicine in all its branches.

"Electronic laboratory reporting" or "ELR" means the automated electronic transmission of laboratory test results from a laboratory to the Department or a local health department for reportable conditions, using nationally recognized electronic standards.

"Medical reporters" includes medical professionals and persons described in 77 Ill. Adm. Code 690.200(a)(1) or successor rules as reporting entities or their equivalent.

"Negative alpha-gal syndrome case" means a person who is considered not to have alpha-gal syndrome based on an alpha-gal immunoglobulin E test result of less than 0.1 kU/L (serum or plasma immunoglobulin E to alpha-gal of less than 0.1 international unit per milliliter or 0.1 kU/L).

"Positive alpha-gal immunoglobulin E test result" means an alpha-gal immunoglobulin E test result of at least 0.1 kU/L (serum or plasma immunoglobulin E to alpha-gal of at least 0.1 international unit per milliliter or 0.1 kU/L).

"Suspected alpha-gal syndrome case" means a person who had confirmatory laboratory evidence with no clinical information available.

Section 15. Mandatory reporting by medical reporters; counties and statewide.

(a) The Department shall adopt rules to track cases of alpha-gal syndrome within counties and statewide.

(b) Medical reporters shall report diagnosed cases of alpha-gal syndrome to the Department in the manner and timeframes prescribed for reportable conditions under the Control of Notifiable Diseases and Conditions Code (77 Ill. Adm. Code 690).

(c) Reporting and tracking of cases of alpha-gal syndrome under this Section shall be independent from or concurrent with any reporting or tracking conducted by the federal government or any federal agency.

(d) The Department has the duty to independently track cases of alpha-gal syndrome in this State in consultation and coordination with federal agencies, including the Centers for Disease Control and Prevention.

Section 20. Laboratory reporting

(a) The Department shall adopt rules requiring a report of alpha-gal syndrome for an alpha-gal immunoglobulin E level of 0.1 kU/L.

(b) A laboratory that finalizes a test result as described under subsection (a) shall report the test result to the Department as a suspected case of alpha-gal syndrome through an electronic laboratory reporting system.

(c) The Department shall follow up on reported suspected cases of alpha-gal syndrome by applying an appropriate random sampling method for confirmation that the cases meet the most current Centers for Disease Control and Prevention surveillance case definition of alpha-gal syndrome.

Section 25. Reporting to the Centers for Disease Control and Prevention. The Department shall submit an annual report to the Centers for Disease Control and Prevention summarizing its findings related to the reporting and incidence of both suspected and confirmed cases of alpha-gal syndrome.

Section 30. Publication of tracking results.

(a) The Department shall publish the results of the tracking of cases of alpha-gal syndrome publicly on the Department's website in a timely manner.

(b) Published alpha-gal syndrome data shall include, but not be limited to:

(1) suspected cases;

(2) confirmed cases; and

(3) an estimate of likely cases based on either State data gathered from random sampling or data previously shared by the Centers for Disease Control and Prevention that showed that approximately 90% of persons with a positive test result had clinical symptoms consistent with alpha-gal syndrome and that they were classified as having confirmed alpha-gal syndrome.

(c) The Department shall not disclose or publish information under this Section that is confidential or is prohibited by law to disclose.