Adrianna is also taking prednisone, and she is being weaned off that steroid, Shingleton said, because it has caused erratic glucose levels, along with weight gain and bloating.
Adrianna received two of four Zenapax treatments earlier this month at Duke, and her insurance company, PEIA Carelink Health Plans, denied payment, Shingleton said, because the drug was not FDA-approved for Adrianna's disease.
The medication costs $1,600 for each treatment, Shingleton said.
"Personally I never had any insurance company for any patient deny Zenapax," said Dr. Vinod Prasad, the Duke University pediatric bone marrow transplant physician.
Shingleton, an elementary school teacher, is a member of the West Virginia state employee's health plan, Public Employees Insurance Agency (PEIA).
Adrianna received the third Zenapax treatment on Friday at Duke and is scheduled to receive another treatment soon.
"Adrianna's response to the combination of steroids and Zenapax has been excellent," Prasad said.
In March 2006, when Adrianna was diagnosed with GVHD, she received Zenapax every other week for several months last year, Shingleton said, and PEIA's Preferred Provider Benefit (PPB) Plan paid for the treatments.
Beginning in July, she had to join PEIA's HMO, Carelink Health Plans, since the PPB plan paid close to $1 million in insurance claims, and the family "topped out," she said.
The disease could create joint problems, and could lead to liver and lung damage if it is not treated, Shingleton said.
"It has to be treated now in order to prevent this," she said.
Shingleton filed an appeal to Carelink. She also contacted Del. Daryl Cowles, R-Morgan, and has written to Gov. Joe Manchin and Sen. Walt Helmick, D-Pocahontas, and is seeking their help regarding Carelink's denial.
He has contacted Del. Walter Duke, R-Berkeley, who is the minority chairman of a House education committee, Cowles said, and is familiar with teacher issues.
"What happens to us and what happens to other people?" Shingleton said. "I want my insurance company to work closely with our doctor at Duke so any medication, regardless of its FDA status, will be available if it is needed."
Four years ago, at age 7, Adrianna was diagnosed with leukemia and after six months of chemotherapy, the cancer went into remission for 18 months.
In 2005, the leukemia returned and arrangements were made for a bone marrow transplant at Duke University Hospital to treat the recurring leukemia.
Telephone messages left with Ava Adkins, Carelink case manager, and Cathy Campbell of Carelink's communications department were not returned.