By BRIDGET SCRIMENTI, Sun Staff
Alan Stone of Chelmsford, who suffers from Lyme disease along with his daughter Angela, 14, says insurance companies are afraid of the high expenses that can come from long-term treatments.
With the number of Lyme-disease cases skyrocketing in Massachusetts in the past five years, some advocates are accusing insurance companies of pressuring doctors not to fully treat the disease because of the expense.
John Coughlan, director of the Massachusetts Lyme Disease Coalition, says physicians are being bullied by insurance companies who don’t want to pay high health-care costs.
“It’s a costly disease if it’s chronic,” says Coughlan. “A lot of physicians will not treat Lyme disease because insurance companies give them such a hassle.”
“We treat any Lyme disease that’s diagnosed and rely on our providers to diagnose that,” says Sharon Torgerson, spokeswoman for Harvard Pilgrim. “We have no restrictions as long as it’s diagnosed by an in-network physician.”
Alan Stone of Chelmsford told lawmakers at a Statehouse hearing Wednesday about his “20-year-long nightmare” with the disease. Stone, his wife, and daughter are all infected. Stone’s wife is in the late stages of Lyme disease and has suffered severe neurological damage, he says. His daughter Angela, 14, contracted the disease in utero.
Stone has undergone multiple rounds of physical therapy for neck stiffness from the disease, while his wife was misdiagnosed with multiple sclerosis and put on steroids, damaging her immune system.
“The question is who is going to pay for all these patients,” says Stone. “ Late-stage patients tend to be very expensive. You can’t even project that kind of cost. The sky’s the limit when it comes to Lyme-disease patients.”
Lyme disease is caused by bacteria spread by tiny ticks. In Massachusetts, the disease is spread by deer ticks. If not treated early, it can cause major damage to the central nervous system, the heart and bones and joints, doctors say.
Local communities, including Chelmsford and Westford, have seen Lyme-disease cases spike this year. Chelmsford has had 21 cases reported this year, up from 12 in 2004. In the past three weeks alone, 20 cases have been reported in Westford. Last year there were just 10.
Patricia Smith, president of the national Lyme Disease Association, says insurance companies are pressuring physicians to stop prescribing antibiotics.
“What we’ve been told by physicians around the country is that insurance companies will tell them they’re prescribing too many antibiotics for Lyme patients,” says Smith. “And that they have to stop treating patients or leave the network.”
Some patients are leaving Massachusetts to find doctors to treat the disease. Jones says so many parents travel to see him because they’re frustrated by the strict clinical tests mandated by insurance companies.
“These children’s parents are under the impression that the HMO is giving guidelines that prevent diagnosis and treatment,” says Jones.
Statlender’s two oldest children tested negative on the ELISA and were told they didn’t have it.
“The ELISA was the only tool used to screen our older children,” says Statlender. “We even went to a pediatric chronic-fatigue specialist in New York state to find out what was wrong. We later realized that the ELISA was an unreliable test.”
Stone, the Chelmsford man, also blames a negative ELISA test for his wife’s misdiagnosis.
“We took a wrong turn 20 years ago because our doctor relied on the ELISA screening, which was false negative,” Stone says.
But Dr. David Sidebottom, director of Infectious Diseases at Saints Memorial Medical Center in Lowell, calls the ELISA test an accurate screening tool. “If anything, (ELISA) may over-identify patients with symptoms that may not be Lyme disease but another condition,” Sidebottom says.
But people like Stone say additional testing is needed, regardless of cost.
“This disease has had a serious emotional impact on the family and taken a huge toll on our marriage,” says Stone.
State Rep. Peter Koutoujian, D-Waltham, chairman of the House Committee on Public Health, said so many people attended the Statehouse hearing that about 70 didn’t have time to testify.
“There were hundreds of people at the hearing who complained about a failure of diagnosis, a delayed diagnosis, and inadequate treatment,” says Koutoujian.
He says the state is researching why there is such discrepancy in treatment.
“The failure of diagnosis and treatment is causing the destruction of so many families and lives,” says Koutoujian. “There were some of the most heart-wrenching stories of children asking if they were going to die from Lyme disease.”