Governor Carcieri is reviewing options to help people with severe cases of Lyme disease pay for the medical treatment they need.

02/08/2003

EAST GREENWICH (AP) -- For nearly two years Emily Morton has lived with headaches, fatigue, muscle pain and, at times, depression.

The high school junior's life has been a series of medical tests and visits with 15 different doctors, who finally diagnosed the problem: Lyme disease.

Rhode Island, with the second-highest incidence rate for the disease in the country, last year passed what proponents hailed as groundbreaking legislation paving the way for the type of long-term antibiotic treatment prescribed for Morton.

The law, however, said nothing about paying for the costly treatment, which can exceed $1,500 a week. The state's dominant insurer, Blue Cross, last year balked at paying for the care beyond four to six weeks in all but one of 16 cases, including Morton's.

Morton's family now pays for intravenous care themselves, counting on the generosity of doctors to lower the weekly bill to a few hundred dollars. Blue Cross has denied their case, but the family is pressing for a change in state law and has found a sympathetic ear in Governor Carcieri.

The Mortons were among the first to take advantage of the governor's public office hours last month to share their story.

"The governor thinks this is a terribly unfortunate case where one family has fallen between the cracks of existing law," Carcieri spokesman Jeff Neal said yesterday. "He is investigating options" to help patients get needed long-term care.

Rhode Island health officials have been reluctant to take sides over what constitutes appropriate care. The Centers for Disease Control has not yet reached a conclusion on long-term antibiotic treatment.

Some doctors think Lyme disease is over-treated. Others, like Morton's New Haven, Conn., physician, Charles Ray Jones, say severe cases can require months and sometimes years of treatment.

Jones, who specializes in pediatric care for Lyme disease patients, testified before Rhode Island lawmakers last year.

He said this week that leaving it up to the insurer to decide whether to provide coverage "was the biggest mistake ever. The law is of no use to protect patients."

Connecticut requires insurers to pay for prescribed long-term care for no fewer than 30 days, a mandate Atty. Gen. Richard Blumenthal says has encouraged them to voluntarily provide coverage beyond the four-week minimum.

"The intent of the law was to make treatment completely determined by the physician and the patient," he said. "Insurers know there will be a statutory mandate if they don't cover for longer than 30 days." Connecticut has the highest incidence rate for Lyme disease in the country.

Rhode Island health officials recently rescinded an agreement with Blue Cross, finding fault with its review of denied Lyme disease cases. The state has received three complaints and given the insurer until Friday to respond.

"There's a tremendous amount of strong disagreement, even in the medical community, about appropriate treatment" for Lyme disease, health department spokesman Robert Marshall said.

"We've weighed in to remove barriers for people to get this treatment," he said. "One of our roles is to make sure that if they make decisions, they do it according to the law. We're trying to . . . give people choices."

Blue Cross spokesman Scott Fraser said the company will hold meetings with physicians in March to "set a formal Lyme coverage policy." He said the policy, which he hopes will be in place by June, will make clear what the company will cover for long-term care. He acknowledges one result could be that the company, despite its previous agreement with the state, will opt not to provide coverage beyond the 30 days.

Rep. Peter Ginaitt, D-Warwick, said it appears Blue Cross is reneging on the agreement worked out in response to the state law. "This General Assembly should think about what that is saying to us."

Fraser, however, said the company is at least considering requests for long-term care.

"What those [denials] show is that the medical necessity has not been proven" in those cases, he said.

Carolee Morton says her daughter has been a prisoner of the disease, though the intravenous therapy is helping.

She needs a tutor to keep up with school work, has trouble concentrating and has suffered the doubts of others who question whether she's even sick.

"Sometimes it's hard for her to talk to her friends, they're all getting their licenses . . ." Mrs. Morton said. "It's been heartbreaking."

Emily says she's committed to pushing the state to do more to help others like her. She pleaded her own case to the governor and has also written Blue Cross officials.

Her short-term goal is simple: "I just want to be a normal teenager."