Lyme Disease Opponents Getting Support Locally, Nationally

By John Voket

Newtown’s State Representative Christopher Lyddy joined Governor M. Jodi Rell for a ceremonial signing of a bill allowing Connecticut doctors to dispense long-term antibiotic treatments for Lyme disease patients. The bill was enacted June 22, but the signing ceremony was held in Ms Rell’s home town at the Brookfield Municipal Center, July 16.

 “I am pleased the governor signed this legislation,” said Mr Lyddy, who himself was recently diagnosed with the disease and co-sponsored the legislation. “The number of Lyme disease cases continues to grow and we need to ensure treatment options are available to patients.”

Maggie Shaw, a registered nurse and chair of the Newtown Lyme Disease Task Force for the last ten years, said, “Speaking as a Newtown resident, I am grateful for the competence and diligence brought to the table by our Representative, Chris Lyddy, in the effort to pass a bill that will help alleviate patient suffering. It was a privilege to have worked with him on this bill, which is an important step for Connecticut residents who, when this bill becomes law, will be able to receive treatment of Lyme disease in their own communities by caring, supportive physicians in a climate that allows them to treat without fear of reprisal.”

In enacting the legislation, the governor’s signature frees doctors to prescribe long-term antibiotics in the treatment of persistent Lyme disease — outside of standard guidelines — without fear of sanctions from state health regulators if the patient’s clinical diagnosis of the tick-borne disease and treatment have been documented by a licensed physician.

“Doctors in Connecticut — the absolute epicenter of Lyme disease — can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected,” Ms Rell said in a release after she originally endorsed the bill in late June. “The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”

The disease gets its name from the shoreline town of Lyme, Conn., where in 1975 a cluster of children and adults there experienced uncommon arthritic symptoms caused by the bacterium Borrelia burgdorferi. Lyme disease is spread through the bite of infected deer ticks. Symptoms include a rash, fatigue, headache, fever, and achy muscles and joints. Later symptoms may include arthritis, neurological problems, and heart problems.

House Bill 6200, which gained broad bipartisan support in the Legislature, was prompted by an ongoing debate in the medical community. Some health organizations have questioned the existence of chronic Lyme disease and the Infectious Diseases Society of America (IDSA) has cautioned against the long-term use of antibiotics.

In his address to those gathered at the bill signing, Mr Lyddy stated, “Although it is not the job of the legislature to dictate the type of treatment that should be provided to patients, it is our responsibility to ensure that people have access to adequate and affordable healthcare. This bill moves to do just that while protecting the doctor and patient autonomy.”

Some physicians were hesitant to treat patients outside the IDSA guidelines because of potential reprimands from medical boards and insurance companies.

“Doctors will have the right to use treatment guidelines based on their clinical experience and best medical judgment,” Ms Rell said. “This bill does not, however, shield any physician who provides substandard care.”

Pat Smith, president of the national Lyme Disease Association, who has been working and meeting with legislators in Hartford to secure passage, commented on the new law: “Justice has been served. Human health has finally triumphed over vested interest in the Lyme capital of the world. Lyme patients and treating physicians in Connecticut can breathe a collective sigh of relief. For years, they have not only been battling the disease but also battling the politics which have prevented patients from getting treatment and physicians from treating.”

Connecticut becomes the third state in the nation to have a law that protects physicians who treat Lyme disease long term.

On the national front, The Lyme Disease Association, Time for Lyme, and the California Lyme Disease Association announced July 17, that the Fiscal 2010 Labor, Health and Human Services Appropriations Committee reported out language on Lyme disease which was written and introduced by Congressman Christopher Smith (R-NJ). US House Appropriations Committee Members Frank Wolf (R-VA), and Nita Lowey (D-NY) were instrumental in its inclusion.

The next step is consideration by the full US House of Representatives.

The language includes an increase of $3.66 million for Lyme disease, from $5.27 million to $8.93 million, for the Centers for Disease Control & Prevention (CDC), the only increase for diseases in the National Center for Zoonotic and Vector-Borne, and Enteric Diseases. CDC’s budget for Lyme has been dropping for several years now.

The language directs the Secretary of the US Department of Health and Human Services to review and coordinate the department’s Lyme activities and to report back on that review by September 2010. It also encourages CDC to improve diagnostics and the National Institutes of Health to provide a conference on the full spectrum of Lyme disease, allowing for patient input.