Rhode Island Legislature Takes Large Leap for Lyme Patients

Rhode Island Legislature Takes Large Leap for Lyme Patients
Bill Mandating Insurance Coverage for Lyme Treatment Unanimously Passes Senate, Governor Signs

East Providence–July 7, 2003 proved to be a fateful day for Lyme patients in Rhode Island. Governor Donald Carcieri signed into law the Lyme Disease Diagnosis and Treatment Act (H6136 SubA/S1173), which unanimously passed in both RI House and Senate on July 2, 2003. Thanks to the leadership and work of the Lyme Disease Association, Rhode Island Chapter, the integrity of the act was maintained and it mandates coverage for physician-prescribed Lyme disease treatment predicated upon thorough physician evaluation of the patient.

Treatment must be covered by insurance companies who are licensed in Rhode Island beginning in 2004. A sunset provision was incorporated into the bill-the bill will expire at the end of 2004, so that its impact may be assessed and evaluated by the legislature to determine further action.

LDARIC co-chair, Lisa Larisa, present at the late night senate vote, said she is "elated" over the passage. Legislators had discussed amending the bill, with among other things, treatment lengths before passage, a move Ms. Larisa termed "unacceptable." The sunset provision was the only change acceptable to LDARIC. "Anything less than what was passed would not have benefited Lyme patients," stated Ms. Larisa. The LDARIC thanks the House and Senate, and in particular, Representative Raymond E. Gallison Jr., D-Bristol and Senator Michael J. Damiani, D-East Providence, for their sponsorship of the bills. According to Ms. Larisa, "We are grateful to Representative Gallison, for initiating the House bill after constituent input, and for his efforts in achieving unanimous passage and to Senator Damiani who kept the ball rolling with his monumental efforts to pass an intact bill which strongly protects patients’ rights."

Julie Merolla, co-chair of LDARIC, also present at the vote, was stunned but grateful for the action. Her son is severely afflicted with Lyme disease and has had difficulty obtaining treatment reimbursement. "This is a victory for Lyme patients, especially our children. They are sick and struggling with this disease, and now maybe they will have one less thing to worry about and can concentrate on getting well," said a jubilant Ms. Merolla, who provided compelling testimony last week before a RI Senate committee hearing on the bill.

Lyme is the fastest growing vector-borne disease in this country. Rhode Island has the second highest per capita instance of the disease in the nation, behind Connecticut. When the disease is treated early and appropriately, patients generally recover. Chronic disease can develop when the bacteria enters the central nervous system and also penetrates and hides inside the body’s cells, making eradication difficult. These patients often require long-term treatment, sometimes with IV.

Unfortunately, many people remain undiagnosed because the telltale EM rash occurs less than 50% of the time. Patients often do not remember a tick bite, and symptoms may be a vague flu-like illness with aches and pains, low-grade fever, and possibly headache, or the symptoms may present in more serious form such as cardiac or psychiatric manifestations.

"This law is a jumping off point," says Pat Smith, president of the Lyme Disease Association, the national parent group of the LDARIC, which also provided committee testimony. "We are working nationwide with our affiliates and chapters to educate state and federal officials to the problems associated with Lyme disease, so that patients are not only able to receive treatment reimbursements, but also that physicians are able to freely diagnose and treat as physicians are trained to do." She was alluding to the successful passage last year in RI of the Lyme Disease Diagnosis & Treatment Act, which permits physicians to treat without interference by the medical licensing board, a situation facing doctors in many areas of the country. " The Rhode Island legislature has been able to see the long range picture here and realize that ignoring patients is not going to solve the problem. They are dealing with it head on," said Ms. Smith, " it is a patient bill, not a vested interest bill."

The LDARIC thanks all the Rhode Island support groups and citizens for participating in the effort to pass this bill. It also thanks all others, including Internet groups, who supported this massive effort.