SUGAR LAND, Texas – A Sugar Land mother is taking her family’s battle with health insurance to the Texas Capitol, hoping to change state law so other children don’t face the same obstacles her daughter has.
Stacy Zwerneman’s daughter, Lela, suffers from autoimmune encephalitis — a rare neuroinflammatory condition where the immune system mistakenly attacks healthy brain cells. Lela’s doctors say she needs regular infusions to manage the disease, but the family’s insurance company has repeatedly denied coverage.
“A family cannot pay $30,000 every four weeks out of pocket. This is why you have insurance,” Stacy said.
A months-long battle with insurance
For nearly five months, the Zwerneman family went back and forth with their insurance provider, facing denial after denial while Lela’s condition worsened.
“She can’t go to school. She’s on homebound. We end up in the ER two times,” Stacy said.
The repeated denials pushed Stacy to look beyond her own family’s situation and toward a legislative solution.
“That’s kind of where our coverage act is coming in, explaining to the legislators that eventual care is not the same as timely access care,” she said.
Texas Pediatric Neuroinflammatory Coverage Act
The proposed legislation is called the Texas Pediatric Neuroinflammatory Coverage Act. State Rep. Suleman Lalani of the 76th District is serving as the House author of the bill, which already has the backing of more than 100 healthcare professionals.
“We are managing a complication that can be prevented. We are pennywise and pound foolish in healthcare. I think we need to be more proactive rather than reactive,” Lalani said.
The bill draws on research compiled by the Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS, Advisory Council — a committee created through Texas House Bill 2783. According to data from the council, approximately 11,000 Texas children are diagnosed annually with one of these types of neuroinflammatory diseases.
“Texas has studied the problem, and now we’re saying we need to act on this problem. So we’re using their report kind of as the groundwork for our proposed legislation,” Stacy said.
Long-term costs of inaction
Stacy argues that denying timely treatment doesn’t just harm children — it ultimately costs the state more in the long run.
“When these kids don’t get treatment, they end up on disability, and then that’s costing the state,” she said.
With the bill already in the filing process and backed by a lawmaker who has practiced medicine for 30 years, Stacy says she won’t stop advocating until children across Texas no longer face hospitalizations for conditions she believes are preventable.
Awareness events are scheduled at the Capitol this Friday.
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