Jill Bronaugh lodged a complaint to the KanCare
Advisory Committee when her managed care company
denied coverage for two of her son Nicholas' prescriptions.
The coverage since has been restored, but Bronaugh
says she worries about other families with special needs
children in similar situations.
(Photo by Thad Allton/Topeka Capital-Journal)
Topeka mother Jill Bronaugh is understandably protective of her son Nicholas, who was born three months premature.
"He was given a zero percent chance of surviving," Bronaugh said. "The doctors in Kansas City said he would be a vegetable if he did survive."
Nicholas, now 6, has defied those doctors. He has cerebral palsy and serious health concerns, but he communicates through sign language, goes to public school and can stand with assistance.
Keeping him in good health requires doctors' visits, home health care, about a dozen prescription drugs and navigating a patchwork of public and private insurance coverage to pay for it all.
Lately the public coverage, Kansas Medicaid through KanCare, has proven particularly tricky, which is why Bronaugh felt compelled to fire off a strongly-worded email to state officials after reading news reports of a recent KanCare forum in which few complaints were voiced.
"I was worried about offending some people with the letter (afterward)," Bronaugh said. "When I hit send I immediately wanted to have it back."
Fiery rhetoric aside, Bronaugh stands by the facts of the missive, which outline a two-week battle to restore coverage of two of Nicholas' prescriptions after it was dropped without warning by her KanCare managed care organization, Sunflower State Health Plan.
One of the prescriptions was for Nexium to treat his severe acid reflux and vomiting. Bronaugh said her son had surgery to attach a portion of his esophagus to his stomach. In most cases that stops the vomiting, but Nicholas is one of the 10 percent who have such a procedure and still manage to vomit.
"I can only imagine how painful it has been for him, and even with the medication he still vomits between two and six times a day," Bronaugh said. "Without the medication, he is constantly vomiting. This type of vomiting has caused his lungs to collapse and has the potential to be life-threatening."
Bronaugh had little choice but to pay out of pocket the portion of the drug not covered by her private insurance when Sunflower State said it no longer would.
Bronaugh did so, but she worried about having to ask her other two children to sacrifice if the state contractor started dropping more coverage. She also was concerned for other families with disabled children who don't have the same means to pay out of pocket or navigate the system as her.
"The nurse for the prescribing doctor was in tears during our last phone conversation, because she was having this same issue with three other KanCare patients," Bronaugh said.
Bronaugh said that is why, after discussing it with her husband, she decided Nicholas' story should be told, despite the family's general preference for privacy.
Bronaugh sent her letter to several people, including the KanCare Advisory Council, the Department of Health and Environment and KanCare ombudsman James Bart. She said Bart, who has a special needs child himself, was particularly sympathetic. Department of Health and Environment spokeswoman Miranda Steele said Bart was the best resource for KanCare beneficiaries with problems, and his office can be reached at KanCare.Ombudsman@kdads.ks.gov.
Response to Bronaugh's complaint was swift. Bronaugh said a Sunflower State representative called her the same day to say she was the victim of a "computer glitch." Nicholas' prescription coverage was restored.
Monica Stoneking, a spokeswoman for Sunflower State, said the Bronaughs are now pre-authorized for the medications in question and the company continues to work with its pharmacy benefits manager, US Script, in how it is "set up for this medication."
"It was inaccurately causing a denial," Stoneking said via email.
Stoneking said the timing of the denial coincided with a 90-day "continuity of care" period at the start of KanCare during which all prior authorizations were honored, plus a 60-day extension specific to Nicholas' unique case.
"This extension was placed in order to discuss the clinical case with the prescriber and work with them to determine the medical necessity of twice-daily indium when the FDA allows only once daily," Stoneking said. "The request for additional information was made, but did not come."
Stoneking also said her organization later approved the Nexium prescription "locally" and asked the Bronaughs' pharmacy to reprocess the claim but the pharmacy didn’t.
"But we are happy to say that we have resolved the issue and are able to get Nick the medication he needs," Stoneking said.
Jill Bronaugh said KanCare's complex communication structure is time-consuming.
In addition to working full-time and raising three children, including one with special needs, she spent hours on the phone with Nicholas' pharmacy, Kansas Medicaid, Sunflower State and US Script.
"I don't have a lot of time (to spare)," Bronaugh said.
She said she wasn’t fully satisfied with Medicaid before KanCare, but her experience with the prescription denials has only heightened her apprehension of the managed care switch.
Meanwhile, she also is concerned about speculation that the federal health care reform, commonly called "Obamacare," will lead to increased rates for her private insurance.
"That's a whole other level of fear and apprehension," Bronaugh said. "For us, it's on both sides."
Which was part of what spurred Bronaugh to write her letter to the advisory council.
She kept a watchful eye on Nicholas on Monday as he played on the floor with his older brother Patrick, who the youngster has taken to emulating lately.
"Everybody has said, since the day he was born, I'm his best advocate," Bronaugh said.