Advocacy Efforts

IL State Rep Dan Swanson and Lauryn Russell

Making Change

Several years ago, Lauryn and I met with our local State Rep Dan Swanson, and our road to making change in Illinois began. With the help of the Illinois State Medical Society, many patients, and a lot of hard work and determination, we passed the Lauryn Russell Lyme Disease Prevention and Protection Law in 2018.

This law gives doctors immunity to treat Lyme disease outside the CDC guidelines without fear of losing their license and sets up a task force with the Illinois Department of Public Health. In 2019, we passed Insurance coverage for Lyme disease through state regulated plans and Medicaid.

Also, in 2019, I was appointed to the Illinois Department of Public Health’s Lyme Disease Task Force.

When going through our legislation, it became evident that I needed to grow what we had accomplished on a local level to be statewide. Therefore, in 2019, I started the Illinois Lyme Association, a 501c3 non-profit. Our board is made up of many individuals who also have been greatly affected by tick-borne disease. We are making great strides in our mission to bring education and awareness of tick-borne diseases. We are excited and just getting started! We have accomplished so much in a little amount of time and have been meeting with providers and hospitals to bring awareness to the medical field. At ILA, we are working hard to collaborate with researchers. We work very closely with the Illinois Natural History Survey – Medical Entomology Lab at the University of Illinois. Dr. Stone and Dr. Tuten are working extremely hard on bringing to light the presence of ticks and the pathogens they carry.

Jennifer Russell and Lyme champion IL State Rep Dan Swanson

Lauryn with Lyme champion Senator Andy Manar

Senator Nybo and Lauryn in Senate Hearing

Dear friend Dr. David Martz and Jennifer for HB0889

Emailing Legislators asking for their support

Susanna Warner, Jennifer Russell and Angie Bowman for House Hearing HB889

IL State Rep Dan Swanson, Christina Butler, Dr. DeLaCruz, Kimberly Heeres-Frank, Lauryn Russell, Steve Struble, Adell Struble, Jennifer Russell and Sarah Wessels

Lauryn Russell and Linda Kehart rallying support at the Capitol

Insurance Coverage for Tick-borne Diseases PASSED!

Committee Hearing Speech from IL State Representative Dan Swanson:

HB 0889: Mandates insurance coverage for long-term antibiotic therapy (over four weeks) for a person with a tick-borne disease. Amends the Health Maintenance Organization Act to apply the mandate to a health maintenance origination and the Public Aid code to mandate Medicaid coverage for long-term antibiotic therapy. The bill also states an experimental drug shall be covered as a long-term antibiotic therapy if it is approved for an indication by the United States Food and Drug Administration.

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Many unknowns still exist for tick-borne illness due to years of neglected priority of scientific research, however, the last three years, research is gaining great traction. This current research proves that the easy-to-cure and easy-to-treat philosophies are invalid and inaccurate.

When detected in its early stage, Lyme disease is treatable with an appropriate course of antibiotic therapy. The Lyme bacteria is very slow growing, and its life cycle is approximately 28 days. If undetected and untreated, the bacteria replicate, and the disease progresses into its late stages, becoming persistent and chronic. Treatment for chronic Lyme disease is prolonged and complex. One antibiotic for a short duration may not be enough to kill the bacteria.

An appropriate length of antibiotics in the first 30 days is necessary to give our constituents the absolute best chance at eradicating these diseases. If a physician prescribes the maximum number of days of antibiotics that the insurance allows, the bacteria can live past that treatment, and we are just setting that person up for treatment failure, and the victim is left to pay any further treatment out of pocket.

Today, we will hear from a few of the many that suffer from tick-borne infection and the struggles and difficulties they have had in getting insurance coverage. Thank you.

IL State Rep Dan Caulkins, IL State Rep Dan Swanson, Angie Bowman, Dr. David Martz, Susanna Warner, Zoe Warner, Jennifer Russell and Richard Warner

**Jennifer Russell & Director Ngozi Ezike**

ILA Director Jennifer Russell and Illinois Department of Public Health Director Ngozi Ezike

So grateful to Director Ngozi Ezike at the Illinois Dept. of Public Health for the time to sit and discuss tick-borne illness in the State of Illinois. ILA continues to work hard to not only form but build these important partnerships to move our state forward to become that leader in the Midwest.

ILA’s Executive Director, Jennifer Russell’s Speech for Insurance Bill Signing.

My name is Jennifer Russell. I am the Executive Director of Illinois Lyme Association, and this is my daughter Lauryn, who has suffered from Lyme Disease since she was 7.

With tick-borne illness on the rise and many emerging vector-borne diseases becoming a rising threat, this legislation is pivotal in the State of Illinois. According to the CDC, tick-borne disease has more than doubled in the last 13 years.

Illinois is not considered an endemic state, but Wisconsin is, and the geographic distribution is expanding into neighboring states. In 2017, the CDC recognized tick-borne disease distribution is expanding in Illinois.

Many in Illinois are suffering from tick-born illnesses. Those with state-regulated Insurance (or private pay) are, in most cases, only receiving 21 days of treatment. If they were undiagnosed for any length of time, like Lauryn, treatment becomes much more complex. Many are losing their families, homes, businesses, and pensions trying to pay for continued treatment, and this legislation provides them with desperately needed options.

On behalf of the Illinois Lyme Community, we just want to say thank you to Governor Pritzker for seeing the great importance of this legislation. Thank you to our Chief Sponsors: State Rep Dan Swanson and Senator Neil Anderson. I would also like to say thank you to the 101st General Assembly for their overwhelming support to Lyme sufferers in this State and their communities. We are so grateful to you all. Finally, thank you to the insurance company stakeholders for their willingness to be a part of the process.

Tammy Swanson, IL State Rep Dan Swanson, Jennifer Russell, Linda Kehart, Governor Pritzker, Lauryn Russell and Laryssa Russell

Lauryn Russell and her sister Laryssa 2023 Deer Expo

Lauryn Russell speaking at Barrington Event

Ex. Director Jennifer Russell with Board Member David Reis, Lyme champions Leader Laura Murphy and Rep. Dan Swanson

ILA Junior Ambassador, Lauryn Russell advocating in Springfield on more Lyme legislation

ILA Junior Ambassador Lauryn Russell with LA's top celebrity wellness coach & personal trainer Kim Strother at Chicago event

ILA Junior Ambassador, Lauryn Russell, with Deputy Leader Norine Hammond and Lauryn's sister Laryssa

2023 Vote for Lyme disease awareness license plates

ILA Junior Ambassador Lauryn Russell back in Springfield Advocating for more Lyme disease legislation.

ILA Board President Dick Warner, ILA Editorial Director Jenny Buttaccio, ILA Executive Director Jennifer Russell, State Rep. Dan Swanson and ILA Policy Counsel Bill Kling being presented with the 2023 House Resolution state May as Lyme disease awareness month.

ILA Board President Dick Warner, Leader Jim Durkin, Ex. Dir. Jennifer Russell and State Rep. Dan Swanson at Chicago Lyme disease event 2023

ILA Junior Ambassador with ILA Editorial Director at the 2023 Project Lyme and ILA fundraising event in Chicago. Lauryn and her mother, Ex. Dir. Jennifer Russell were guest speakers.

Lauryn Russell taking a bite out of Lyme with her Principal Garrett Lefferson