ALS Association's Top Priorities Transformed into New Laws for Hoosiers Living with ALS

March 13, 2024 (Indianapolis, IN) – The ALS Association celebrates a major victory for ALS advocacy as Governor Eric Holcomb has signed two critical pieces of legislation into law that will significantly improve the lives of Hoosiers living with ALS (amyotrophic lateral sclerosis).

Senate Bill 215 (authored by Sen. Kyle Walker) ensures that all Hoosiers under the age of 65 diagnosed with ALS can access affordable Medicare supplemental insurance (Medigap) plans. Previously, these individuals faced a financial burden due to Medicare only covering 80% of treatment costs. This new law will help alleviate the financial strain on ALS patients and their families.

Senate Bill 273 (authored by Sen. Ed Charbonneau) requires insurance companies to cover biomarker testing for ALS and other conditions. Biomarkers are biological markers that can aid in diagnosing ALS. Early and accurate diagnosis is crucial for ALS patients, allowing them to access treatment and participate in clinical trials sooner.

“By signing SB 215 and SB 273, Governor Holcomb has joined legislators in enacting the ALS Association’s top two 2024 Indiana state priorities into law,” said Alex Meixner, managing director of advocacy at the ALS Association. “As of July 1, Hoosiers living with ALS under the age of 65 will finally have access to the affordable Medigap coverage they need, and insurance companies will be required to pay for diagnostic ALS biomarker tests as soon as they become available.

“These new laws represent a big step forward for the ALS community in Indiana, and another step forward for the ALS Association’s efforts to pass ALS-focused laws in statehouses across the country.”

The ALS Association recognizes the critical role played by the following individuals and organizations in advocating for the passage of these bills:

• ALS Patient Advocates: Kelly Cadwallader and Lindsey Black
• ALS Legislative Champions: Senators Chris Garten, Scott Baldwin, Cyndi Carrasco, Rod Bray, Fady Qaddoura, Vaneta Becker, Dan Dernulc, and Representatives Dave Abbott, Matt Lehman, Brad Barrett, Todd Huston, and Martin Carbaugh
• Coalition Partners: Dialysis Patient Citizens and the American Kidney Fund

SB 215 and SB 273 build upon a successful 2023 legislative session for the ALS Association in Indiana, which saw a first-ever state appropriation of $2 million to support Hoosier families living with ALS, the passage of a law ensuring drug company rebates benefit patients, and the creation of an Indiana Rare Disease Advisory Council.

The ALS Association remains committed to working with the Indiana General Assembly, Department of Insurance, and other state government officials to ensure that Hoosiers living with ALS can fully benefit from these new laws.