LIVINGSTON, Tenn. (WTVF) — A mother in Overton County is desperately trying to get financial help for Easton, her 5-year-old son, who needs an expensive medication that Tennessee's Medicaid program doesn't cover.
Shelly Scantland explained that Easton has a rare disorder called Congenital Sucrase-Isomaltase Deficiency (CSID). This disorder prevents his body from making enough of the enzyme needed to digest certain sugars and starches properly.
"With his stomach issue, we may only get a boiled egg in him literally all day. Sometimes he may not eat anything," Scantland said. "I mean, we're borderline to feeding tube, and I'm fighting not to go that route because it's going to take his childhood away."
Easton's pediatric gastroenterologist recommended he take Sucraid, a prescription medicine made to break down sugar molecules in food.
According to the family's insurance provider, TennCare, the problem is that Sucraid isn't on the covered drug list. The manufacturer, QOL Medical LLC, doesn't participate in the rebate program that helps lower the cost of outpatient prescription drugs for Medicaid patients.
When Scantland contacted Tennessee's pharmacy service, Optum Rx, she said she was told the only way to get the medication would be to pay for it herself.
"The quantity the doctor prescribed...180 mL for a 30-day supply, that price is $8,780.32," a pharmacy representative said on the phone while we were with the Scantland family.
That amount is far beyond what the average family can afford, especially this family, which is struggling to make ends meet.
Shelly, who homeschools Easton due to his complex medical needs, is unable to work following her recent brain surgery. The family is selling candy bars to raise money for Easton. Some of the hundreds of wipes and diapers he goes through each month are covered, but not all of them.
"It's hard as a mom dealing with this. He's been put to sleep so many times I cannot count," Shelly said.
Without Sucraid, Easton's health could deteriorate further, potentially forcing him to give up activities he loves, like karate.
"A child who's got so much going on, why do they deserve this?" Shelly asked. "It's not fair..."
Since NewsChannel 5 got involved, TennCare has begun exploring patient assistance programs through the CDC and possibly the drug manufacturer to help cover Easton's medication.
For families facing similar challenges with prescription costs not covered by Medicaid or insurance, free or rural health clinics often provide low-cost or free medications to those who qualify.
Are you caring for a loved one with a chronic illness? We want to hear your story. What resources have helped you? Your experience could help others and inspire future coverage. Email me at Hannah.McDonald@NewsChannel5.com.
This story was reported on-air by Hannah McDonald and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
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