§ 805-72 — Lyme Disease Innovation Program

(a) The Department shall consult with the Department of Agriculture, the Department of Public Health, and members of the University of Illinois' INHS Medical Entomology Program to establish the Lyme Disease Innovation Program no later than one year after August 11, 2023 (the effective date of Public Act 103-557). The Department shall contract with an Illinois not-for-profit organization whose purpose is to raise awareness of tick-borne diseases with the public and the medical community to operate the Program. The Program's purpose is to raise awareness with the public and to assist persons at risk of Lyme disease and other tick-borne diseases with education and awareness materials and campaigns while developing evidence-based approaches that are cost-effective. (b) The Program shall implement a statewide interagency and multipronged approach to combat Lyme disease and other tick-borne diseases in Illinois, including adopting an evidence-based model that recognizes the key roles that patients, advocates, and not-for-profit organizations have in fighting Lyme disease and tick-borne diseases. The Program's objectives include issuing grants, subject to the approval of the Department, to State agencies and Illinois not-for profit organizations for the following purposes: (1) Bringing awareness of Lyme disease and tick-borne diseases by any one or more of the following methods: (A) creating innovative ideas and collaborations for raising awareness about risks and prevention; (B) amplifying and improving access to essential information supporting innovations in prevention, education, and care with open data and science; (C) fostering the development of new, community-based education and prevention efforts; and (D) using programs, website advertising, pamphlets, or other methods to increase the awareness of Lyme disease and tick-borne diseases; (2) Engaging stakeholders to facilitate patient-centered innovations by (i) building trust among stakeholders through listening sessions, roundtables, and other learning approaches that ground innovations in lived experience, (ii) engaging stakeholders in identifying current areas of need to promote targeted innovations that will make real-world improvements in quality of care, and (iii) gaining insight into patient needs and priorities through stakeholders' collective wisdom and applying that wisdom in shaping future innovation challenges and events. (3) Advancing stakeholder driven interdisciplinary and interagency collaborations by providing resources to not-for-profit organizations whose purpose is to raise awareness of tick-borne diseases with the public and the medical community in order to (i) facilitate the stakeholder engagement and collaborations and patient-centered innovations and support groups, (ii) identify ways to better collect and share data while raising awareness of tick-borne illnesses, and (iii) assist with the development of outreach and education materials and approaches for State agencies. (4) The University of Illinois' INHS Medical Entomology Program maintaining a passive tick and tick-borne pathogen surveillance program, based on ticks contributed by the Illinois public, and including tick identifications and disease-agent testing of a subset of identified ticks; compiling evidence and conducting research on tick bite prevention and risk of tick and tick-borne pathogen exposure; and providing evidence, results, and analysis and insight from both the passive surveillance program, on tick species and tick-borne disease-agent distributions and diversity in the State, and its related research on tick bite exposure and prevention, to support the Lyme Disease Innovation Program objectives. (c) The Program shall be funded through appropriations from any lawful source. The not-for-profit organization contracted with to operate the Program shall be paid, subject to the approval of the Department, for its operation of the Program. The University of Illinois' Prairie Research Institute shall be paid, subject to the approval of the Department, for the INHS Medical Entomology Program's operation of a passive tick surveillance and research program from moneys deposited into the Fund or from other appropriations. (d) The Department must adopt rules to implement this Section. (e) The requirements of this Section are subject to appropriation by the General Assembly being made to the Department to implement the requirements.

Legislative History

(Source: P.A. 103-557, eff. 8-11-23; 104-2, eff. 6-16-25.)