Rare disease treatment advocate runs to represent Missouri House 96th District – St. Louis Call Newspapers

This year’s race for Missouri’s 96th House of Representatives district features Republican Brad Christ and Democrat Leslie Derrington, both new to public office. The election is Tuesday, November 8.

Derrington has been an advocate for rare disease research since 2012, when his 2-year-old daughter was diagnosed with spinal muscular atrophy. In 2017, Derrington testified before the Missouri Legislature to add the disease to the Missouri Newborn Screening Panel – the proposal was approved that year, making Missouri the first state to add the disease to its screenings, “forever changing the Course of Illness for Missouri Children.”

She also advocated for the Affordable Care Act and the same Washington DC ACA testing issue was able to remain untouched after being within a vote of a repeal.

“My daughter’s health care is in seven figures every year, so the thought of overthrowing (the ACA) without a plan was terrifying,” Derrington said.

She said that today, 98% of children nationwide are screened for SMA at birth and are able to receive life-saving treatment.

Derrington said win or lose, she is working to form Missouri’s first disability caucus with state officials and other candidates. The group previously held a Disability Town Hall earlier in October at Watson Trial Park.

“I really want people with disabilities to have an open line of communication with their state government. There are so many things we can do better… making sure transport and health care are more accessible,” she said.

Derrington said after seeing success on the rare disease front and seeing how the legislature works, she began looking for other ways to help other worthy causes. She then volunteered as a citizen lobbyist for the Sierra Club, an environmental group, and with Moms Demand Action and for Medicaid expansion.

She said after reviewing the 96th District ballot in January, only Republicans filed, so she saw this as an opportunity to take her advocacy to Jefferson City.

Including health care, other issues important to Derrington are support for public schools and women’s reproductive rights. Derrington said even pro-life citizens told him they were upset with the extremes of Missouri’s abortion laws.

“As a woman in this state, a bill can pass the House and the Senate and be signed by the governor without a single female vote. They passed incredibly restrictive (legislation), essentially eliminating all abortion care in the state unless a woman shows signs of death,” Derrington said. “I don’t think I’ve heard a single voter say they’re okay with a child who’s been raped going ahead with a pregnancy, we’re all horrified by that idea.”

Derrington said the state has been in steady decline over the past 20 years in how money is invested in the community, and the division and “culture wars” in Jefferson City serve only as distractions.

Win or lose, Derrington plans to continue his advocacy for the treatment of rare diseases and will continue to push for a disability caucus in the legislature.