Bill Introduced in Illinois Would Increase Access to Genetic Testing

Newswise — SPRINGFIELD, ILLINOIS – Susan G. Komen®, the world’s leading breast cancer organization, applauds Senator Julie A. Morrison (D-Deerfield) and Representative Camille Y. Lily (D –Oak Park) for introducing legislation that would eliminate financial barriers to clinically appropriate genetic testing, as well as the recommended screenings based on the results of that testing.

In Illinois, more than 11,870 people will be diagnosed with breast cancer and 1,680 people are expected to die of the disease in 2024 alone. In the U.S., 5-10% of breast cancers are related to a known inherited gene mutation. The lifetime risk of breast cancer increases 20-49% for women with moderate risk inherited gene mutations and 50% or more for women with high-risk inherited gene mutations.

SB 2697/HB 4562, introduced by Senator Morrison and Representative Lily, eliminates the patient out-of-pocket costs for multi-gene panel testing for inherited gene mutations and evidence-based screenings, ensuring individuals have access to critical information regarding their lifetime cancer risk and recommended early detection and cancer surveillance.

“Passage of this legislation will allow patients to better understand their lifetime cancer risk and access to needed risk reduction and treatment strategies,” said Molly Guthrie, Vice President of Policy and Advocacy at Susan G. Komen. “Everyone should have the vital information needed to make informed decisions about their healthcare without burdensome financial barriers.”

Germline testing is a type of test that looks for inherited mutations that have been present in every cell of the body since birth. These tests are conducted via the collection and analysis of blood, saliva or cheek cells. Identification of inherited cancer risk can help guide decisions regarding recommended screenings for the early detection of cancer, personalized cancer treatments and risk-reducing medical treatments.

“With the medical advances in science, our healthcare policy must advance with it,” said state Sen. Morrison. “Being able to predict cancer before its onset will ultimately minimize treatment expenses, extend and greatly impact the average person’s life quality and expectancy.”

Studies have shown an estimated 83 percent of eligible patients that underwent multigene panel testing had changes to their medical management, including modifications in follow-up and chemotherapy strategy.

“In order to take care of our bodies, we need to know our bodies. Unfortunately, lack of access to proper testing can make attempts to understand our health risks a guessing game,” said Rep. Lily. “This legislation will allow those with a family history of breast cancer access to the genetic testing they need in order to know their real risks.”

According to a 2020 American Association for Cancer Research Report, 65%  of young white women with breast cancer were offered genetic testing, while only 36%  of young Black women with breast cancer were offered the same test options. Additional studies show that minority patients were more likely to utilize genetic testing following a cancer diagnosis but less likely following a family history of cancer, resulting in a missed opportunity for mutation detection and cancer prevention for these patients.