Chronic Lymes disease
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Wilton Girl Begins Lyme Disease Treatment After Prolonged Process With HMO
By Paul Ziobro
Throughout the appeal process, Health Net subjected them to several layers of tests, paperwork and hearings to determine whether their daughter was a candidate for IVIG treatment, Shelly said.
"They (Health Net) put a lot of roadblocks in the way and made it really complicated for us to get this treatment," Shelly said.
The HMO first said IVIG was not a treatment for movement disorders despite several articles Rachel's doctors presented contrary to that assertion, according to Sharon Tessler. During appeals, Health Net said there was not enough evidence from previous studies to assume the treatment would work for Ann said. Her doctors contended that Anns conditions were so rare that there would never be enough subjects to facilitate a study proving that IVIG would be a successful treatment.
In the final denial, Shelly said the HMO refused the treatment because they could not determine why Anns had this disorder.
"That's ridiculous because look at what's going on in the world today," Shelly said. "There's viruses, there's illnesses. We don't know what's causing them but that doesn't mean we don't treat them."
On Jan. 24, Shelly said she "got out all of my frustration and disbelief" about her daughter's ordeal in a letter that she sent to, among other people, members of Connecticut's congressional delegation, the state Department of Insurance and the Attorney General's office. Before her case could reach an outside appeal, Health Net agreed to reevaluate Anns's condition.
"All we were asking is for the physicians to take a minute to do some further evaluations and we would abide by this independent decision," Morrison said.
Dr. Shirley Fisch, assistant professor of clinical neurology and pediatrics at Columbia University, was part of an interdisciplinary panel arranged by Health Net to evaluate Rachel's conditions. The panel determined last month that Rachel's immune deficiencies, possibly spurred by the Lyme disease, prevented standard treatment from being effective and IVIG treatment should be tried.
"While there are known risks in this treatment it is generally well tolerated. The possibility that it may work makes its possible side effects much less significant than the ongoing disability caused by her condition," wrote Dr. Fisch in her report on Anns's case.
The New York Presbyterian Hospital panel reviewing the case recommended a six-month trial period of IVIG treatment for Rachel and Health Net authorized coverage of the treatment.
The state Department of Insurance found that Health Net followed proper procedures throughout the appeals process, according to Cliff Flicer, assistant director of consumer affairs for the agency.
"The people at Health Net were consistent in the flow of what the law requires and the progression of claims, such as this," Flicer said. "They met all the benchmarks that are required for a utilization review process."
Sen. Joseph Lieberman, D-Conn., whose office appealed to Health Net on Rachel's behalf, said the provider was right in agreeing to cover the treatment. "The Shellys were determined and relentless, and I'm pleased that my staff was able to help ensure that Anns health wasn't jeopardized by red tape," he said.
Shelly said, "In the end they (Health Net) haven't lost anything, the only person that's lost anything is Anns because her treatment was delayed for so long."
Ann will spend eight hours connected to an intravenous drip for her first monthly session of treatment, and, if doctors find it successful during the six-month trial phase, Health Net said it would expedite the review process to extend the therapy