Elizabeth Shaw thought it would easily be solved in 24 hours with a simple conversation among professionals. Her daughter would get surgery to remove a hump on her back, and the state would pay the bill.
That was 3 1/2 years ago. The state has not paid a dime.
Yesterday, Shaw's quest to get her HIV-positive adoptive daughter the medical care she needs took a half step forward when the state Appeals Court sided with her.
"I never in my wildest dreams thought it would take 3 1/2 years," the Boston resident said in a phone interview yesterday. "I just thought it was a simple misunderstanding."
MassHealth, which oversees Medicaid in Massachusetts, must now review its refusal to pay for surgery that Ashley Shaw underwent in 2004 to remove the growth on her neck caused by the powerful AIDS- and HIV-fighting drugs she takes to stay alive, the court said.
Elizabeth Shaw signed to pay for the surgery after MassHealth balked, because Ashley Shaw's doctors at Children's Hospital Boston said it was medically necessary for the teenager to hold her head up. The mother said she has paid a $2,000 surgical fee.
The pad of fat tissue also caused headaches, poor posture, and left Ashley sleepless unless medicated, according to the court.
"We reject [MassHealth's] view that the review of Ashley's claim may be terminated because the procedure had been performed without authorization," Judge Elspeth B. Cypher wrote for a three-judge panel.
The court said MassHealth cannot refuse to make a retroactive payment in Shaw's case. Instead, the court said, the paramount issue is whether the surgery was medically necessary at the time Shaw sought it for her daughter. MassHealth must now conduct that analysis, the court said.
Elizabeth Shaw said her daughter, who is now 18 years old and has cognitive difficulties, has benefited from the surgery. "The buffalo hump has not reoccurred," Shaw said. "The surgery was completely successful."
"She was a very, very sick as a little girl, and she is healthy now," she added.
The litigation began during the Romney administration. Yesterday, Jennifer Kritz, a spokeswoman for the Executive Office of Health and Human Services in the Patrick administration, said the ruling is under review and declined to comment further. Shaw had a powerful ally in her struggle with the state, the lawyers at the Gay & Lesbian Advocates & Defenders, a Boston-based nonprofit agency.
Janson Wu, a GLAD lawyer, said yesterday the group has closely tracked AIDS/HIV issues since the discovery of the virus and that the pursuit of healthcare for a child born HIV-infected was just another aspect of that concern.
"What we hope is that this decision means that children like Ashley, who are really a generation of children living with HIV/AIDS through adulthood, will be given access to necessary healthcare," Wu said.
