PINEVILLE, La. (KALB) – A local 9-year-old is in the fight for her life after her family claims a change in insurance halted her possibility of a transplant.
As News Channel 5’s Emileigh Forrester (Twitter: @EmileighKALB) reports, the girl’s mother is doing everything she can to get that changed, and it appears health officials are listening.
Nine-year-old Kylie Bush wants to be normal.
“I want to be able to do the things that other people can do,” she said.
Her mom, Joan Walleser, said Kylie was dropped from a contract with the state for an organ transplant in November.
“She has what they call short gut syndrome,” said Walleser. “Now, she’s kept alive by an IV and the stuff that keeps her alive, it does cause ongoing liver damage.”
The girl needs a new liver, pancreas and small bowel.
But, Kylie’s third level of insurance recently changed from Legacy Medicaid to Bayou Health. The family said that’s something they weren’t aware of. They said the change made null and void that contract for the transplant.
“I was concerned at first,” Walleser said. “But, I had confidence that they would fix it but then they were kind of saying no, she’s not going to get back on Legacy Medicaid.”
Walleser said she has been in contact with the Department of Health and Hospitals, who is trying to figure out what went wrong. Walleser said she’s not concerned with the basic services.
“With the transplant, the actual transplant and the contract, it is a multi-million dollar procedure,” said Kylie’s mother.
However, the state is contesting that assertion as well as information in a post on the website “change.org” that was started by a family friend. In a statement, Amelia Burns with DHH told News Channel 5 that Kylie is still on the list to get that expensive procedure. They believe there is just confusion over how to access the benefit.
“No individual has lost coverage or access to care as a result of the ongoing transition of services from fee-for-service Medicaid into managed care, and the move to managed care would not have caused the transplantation contract issue described in the post,” Burns wrote in the statement.
Burns said DHH secretary Kathy Kliebert called the family Monday and officials followed up Tuesday to discuss her concerns. They say the proper steps are being taken to ensure Kylie receives the care she needs.
As a single mother, Walleser works around the clock to provide for Kylie and her siblings.
While officials are now working with her to resolve the issue, Walleser said the stress of the entire ordeal has made everything a lot more difficult.
“If she does not get the transplant, however long her little body can survive on TPN and then it’s just nature takes over and her survival will not be, not be that good,” said Walleser.
Kylie’s mother also started a GoFundMe page that has raised nearly $10,000 to cover expenses.
Below is a copy of the statement sent by Amelia Burns to News Channel 5:
While privacy and patient protection laws prohibit us from disclosing specifics from the Change.org petition, we have investigated these claims thoroughly and found the post to be wildly inaccurate. No individual has lost coverage or access to care as a result of the ongoing transition of services from fee-for-service Medicaid into managed care, and the move to managed care would not have caused the transplantation contract issue described in the post.
As the Department evaluates the operation of the Medicaid program and strategies that have been successful around the nation, it incorporates these practices into its Medicaid state plan. When, as here, the best practice involves moving groups of individuals into managed care, the Department spends significant resources preparing providers and the population for the transition. Despite these efforts, we can never do enough outreach and education to reach everyone before the transition.
This case is an example of someone who did not receive the outreach she needed to be comfortable that her child’s services were still available. Secretary Kliebert called her personally on Monday and DHH officials followed up yesterday to discuss her concerns. We now have both her Bayou Health plan and Medicaid officials working with her to work through the steps she needs to take to ensure her child receives proper care. There was no change in the benefit offered, just confusion over how to access that benefit, and we are working directly with the family on that issue.
Finally, to the statement alleged to have been made by a Department employee, we are investigating the matter and will take appropriate action. We do not in any way condone or support a statement like the one alleged in the petition.