Rare disease treatment advocate running to represent the 96th Missouri House District

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Leslie Derrington

By Lucas Irizarry, For The Call

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

Derrington has been an advocate for rare disease research since 2012, when her 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, “changing the course of the disease forever for kids in Missouri.”

She has also advocated for the Affordable Care Act and the same screening issue in Washington D.C. ACA was able to stay intact after coming within one vote of a repeal.

“My daughter’s health care runs seven figures every year, so the idea of overturning (the ACA) without a plan was terrifying,” Derrington said.

She said now 98 percent of children in the country are screened for spinal muscular atrophy at birth and are able to get a lifesaving treatment.

Derrington said win or lose, she is working to form Missouri’s first disability caucus with state representatives and other candidates. The group previously hosted a disability town hall earlier in October at Watson Trial Park.

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

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

She said after looking at the ballot for the 96th District in January only Republicans had filed, so she saw that as an opportunity to take her advocacy to Jefferson City.

Including health care, other important issues for Derrington are support for public schools and reproductive rights for women. Derrington said even pro-life citizens have told her they are upset with the extremity of Missouri abortion laws.

“As a woman in this state a bill can be passed in the house and the senate and signed by the governor without a single female vote. They have passed incredibly restrictive (legislation), basically eliminating all abortion care in the state unless a woman is showing signs of dying,” Derrington said. “I don’t think I’ve heard from a single voter that they are okay with a child who has been raped to go ahead with a pregnancy, we all are horrified by this idea.”

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

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