Wilton Girl Begins Lyme Disease Treatment After Prolonged Process With HMO
By Paul Ziobro
WASHINGTON – Patience and persistence paid off for a Weston family, whose child plans to begin potentially life-changing treatments Sunday following a five-month long appeal process with their health care provider.
For more than half her life, eight-year-old Rachel Tessler’s health has been deteriorating due to Lyme disease, which has contributed to her current movement disorders and mental decline, her mother, Sharon Tessler, said.
“Her memory of herself has always been as someone who’s sick,” her mother Sharon Tessler said. “She doesn’t really remember what it’s like to be the energetic kid she was and not have these disorders.”
When intravenous antibiotics failed, the Tesslers fought to persuade their HMO, Health Net, to cover an expensive, experimental treatment recommended by several doctors. The Shelton, Conn.-based company agreed Monday to provide at least a six-month trial phase of the treatment, which the Tesslers are “excited about and hoping everything goes smoothly,” Sharon Tessler said.
Because of the experimental nature of the treatment and Rachel’s rare combination of conditions, Health Net wanted to take extra precautions, including consulting several specialized doctors, before signing off on intravenous immunoglobulin (IVIG) treatment, according to company spokespeople. IVIG is a process that would boost a deficient immune system to help it accept antibiotics better.
“This is the outcome we wanted. Independent physicians working with the Tessler family and coming to a place where everyone was comfortable with the course of treatment and evaluation,” Health Net spokeswoman Alice Ferreira said.
Rachel probably contracted Lyme disease when a deer tick bit her cheek on her 4th birthday, Sharon said, but the main visual symptom of the disease-a red, slowly expanding “bull’s-eye” rash, according to the Center for Disease Control-never materialized. The disease went undiagnosed for two years as Rachel was scuttled to specialists for pains in her knees and feet, an inability to concentrate, insomnia and “awake seizures,” where her body would flail for up to an hour, Sharon said.
“The first time it (an awake seizure) happened, my husband (Brad) and I held her legs down and her toes started to move, and she was going, ‘Make this stop! Make this stop!” Sharon said.
Rachel’s Lyme disease had proliferated without proper treatment for so long that it spread to her spinal fluid and brain, contributing to her movement and cognitive disorders, Sharon said. Once she was positively diagnosed with Lyme disease, doctors tried IV antibiotics but that treatment only had a temporary effect.
Rachel’s pediatric neurologist, Dr. Abba Cargan, first recommended IVIG treatment last November. Cargan declined to comment on her condition or treatment, according to his office.
Initially, Health Net denied coverage for IVIG because they maintained the little girl had no clear diagnosis and Rachel would be at risk to the treatments’ side effects, according to Health Net spokesman Ira Morrison.
Throughout the appeal process, Health Net subjected the Tesslers to several layers of tests, paperwork and hearings to determine whether their daughter was a candidate for IVIG treatment, Sharon Tessler said.
“They (Health Net) put a lot of roadblocks in the way and made it really complicated for us to get this treatment,” Sharon Tessler 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 Rachel, Tessler said. Her doctors contended that Rachel’s 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, Tessler said the HMO refused the treatment because they could not determine why Rachel had this disorder.
“That’s ridiculous because look at what’s going on in the world today,” Tessler 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, Sharon Tessler 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 Rachel’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 Rachel’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 Tesslers were determined and relentless, and I’m pleased that my staff was able to help ensure that Rachel’s health wasn’t jeopardized by red tape,” he said.
Sharon Tessler said, “In the end they (Health Net) haven’t lost anything, the only person that’s lost anything is Rachel because her treatment was delayed for so long.”
Rachel 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.
Published in The Hour, in Connecticut.
