Legislation authorizing TennCare to recognize Kleefstra syndrome unanimously passed in the Tennessee House of Representatives on March 10.
NASHVILLE, Tenn. – Legislation authorizing TennCare to recognize Kleefstra syndrome unanimously passed in the Tennessee House of Representatives on March 10.
House Bill 502, sponsored by State Rep. Mary Littleton, R-Dickson, authorizes the Division of TennCare to provide coverage and benefits, including genetic testing and treatment, for patients with Kleefstra syndrome in the same manner that the division covers other disorders like autism and Down syndrome.
“There are only eight people in Tennessee diagnosed with Kleefstra syndrome, and one of them is from Dickson. When I heard their story of overwhelming medical costs and their advocacy for coverage, I was inspired to help in every way I can,” Littleton said. “House Bill 502 will ensure families access to essential testing and treatments that can significantly improve their loved ones’ quality of life.”
Kleefstra syndrome is a rare genetic disorder impacting less than 1,000 people across the United States. It is caused by a mutation in the EHMT1 gene or the deletion of a specific region of chromosome 9 that includes EMHT1. This gene affects multiple organs and functions of the body including the face, brain and heart.
State Rep. Michael Hale, R-Smithville, one of the co-sponsors of the bill, also has a constituent living with Kleefstra syndrome.
“I’m honored to stand with Rep. Littleton to ensure Kleefstra patients and their families receive the support they deserve in accessing critical care,” Hale said. “This legislation will have a profound impact on Tennessee families facing the diagnosis and I’m proud to have a small role in making that a reality.”
Characteristics of the disorder include developmental delay and intellectual disability, severely limited or absent speech and hypotonia. Individuals may also have distinctive features like small head size and broad forehead.
Often times, Kleefstra syndrome is characterized as Down syndrome or autism by insurance companies because of the various similarities and the rarity of the disease. Impacted families have been advocating for this distinction and recognition for years to ensure families get necessary coverage.
TennCare currently provides coverage for treatment related to Kleefstra syndrome that is deemed medically necessary. House Bill 502 establishes certain coverage and benefits may be provided without limitation.
The companion bill, Senate Bill 522, is scheduled to be heard in the Senate Commerce and Labor Committee on March 11.
If passed, the bill would take effect on July 1, 2025.
Mary Littleton represents District 78 which includes Cheatham and part of Dickson Counties.
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