Blumenthal Criticizes DPH—

Residents Turn Out To Support

Lyme Disease Patients’ Rights

By Shannon Hicks

On the same day that Attorney General Richard Blumenthal chastised the state Department of Public Health (DPH) for failing to institute an electronic system for reporting Lyme disease cases, a number of Newtown residents were at the state capitol for a rally looking to raise awareness about just that public health crisis.

Lyme disease affects tens of thousands of people in Connecticut and across the country.

Newtown Lyme Disease Task Force (NLDTF) representatives joined Attorney General Blumenthal, State Representative Claudia Powers, and E! Entertainment reporter and Lyme disease patient Brooke Landau during the June 2 event. In addition, Lyme disease expert Dr Joseph Burrascano, social worker Sandy Berenbaum, Lyme Disease Association President Pat Smith, and Dr Charles Ray Jones were scheduled to attend.

Cases of Lyme disease in Connecticut — the state where the disease was first discovered during the mid-1970s — increased 34 percent last year. The Connecticut State Department of Public Health said there were 1,810 new cases of Lyme disease reported in 2005, an increase from 1,348 the previous year.

The 2005 incidence rate in Connecticut was 53 cases per 100,000 people.

“We should be alarmed and astonished that our state is vastly underreporting the severity of our Lyme disease crisis,” Mr Blumenthal told those at the rally last Friday. “Very simply, the Department of Public Health is underreporting the incidence of the disease by huge, horrendous magnitudes. Our system is currently reporting only a fraction of the number of actual cases. It is a public health travesty and tragedy.

“The reason for current underreporting is that the Department of Public Health eliminated laboratory reporting in 2003 due to supposed budgetary constraints. The number of reported cases declined from approximately 4,000 in 2003 to about 1,300 in 2004. For the last year of statistics in 2005, they increased by 34 percent to 1,810 cases.

“The 500-case increase is frightening, but it would have been much higher if an adequate reporting system for laboratories were in place. Currently, the only reporting is from physician offices. “

Lyme disease has been reported in 49 states, with data from the Centers for Disease Control and Prevention showing 166,868 reported cases of Lyme disease nationally from 1994 to 2003. Reported cases are estimated to be approximately ten percent of actual cases that meet the CDC definition.

“Outrage is growing because the incidence of tick-borne diseases is rising at an alarming rate, while the medical community is not keeping pace,” rally committee member and Newtown Task Force Chair Maggie Shaw said recently. “Thirty years have passed since Lyme disease was identified and we still have no accurate testing, no comprehensive physician training, and no adequate research on chronic Lyme disease.”

Mrs Shaw knew of at least 15 Newtown residents who attended the Hartford rally.

“The entire thing was a success,” she said this week. “It was a success because our goals were accomplished — people need to know about this disease, and patients’ rights, which are not being served.

“The doctors who treat this disease are harassed by insurance companies. We can’t get care in our own town. Doctors remain uneducated [about Lyme disease], many are in denial,” she continued. “Having the attorney general there was a huge help.”

Preventing and treating Lyme disease is a personal issue for Mrs Shaw, whose entire family — herself, her husband, daughter, and both sons — have all been diagnosed with the illness. It took six years before Mrs Shaw was properly diagnosed; one of her sons also suffered for six years before being diagnosed.

Lyme disease can appear similar to arthritis, chronic fatigue syndrome, fibromyalgia, insect bites, stings and spider bites, and even rashes.

“The reason we became so ill and so sick is we weren’t diagnosed sooner,” Mrs Shaw said. “There is a huge problem with Lyme disease. We really need to get a community Lyme disease task force. People in the community, the school system, grounds keepers, everyone should be able to be involved and get good information about this.”

In January 2004, the DPH promised that an electronic or online laboratory reporting system would be in place by the summer of 2005. According to Mr Blumenthal, there is still no firm date or plan for adequate laboratory reporting by DPH.

“We are now beginning the summer of 2006 at the height of the Lyme disease season without an adequate reporting system in place,” Mr Blumenthal said on June 2. “The Health Department is underreporting and understating the numbers of Lyme disease cases and misleadingly reassuring the public.

“This underreporting deprives Connecticut of federal resources for research, improved diagnosis, enhanced treatment, and testing,” he continued. “Numbers drive funding and policy — and inaccurate numbers drive them down. We need better interdiction and intervention, which are stymied and restrained by underreporting the problem — causing further underfunding by the National Institutes of Health and the Center for Disease Control.

“My hope is that this rally will mobilize opinion demanding action. In the meantime, my office will continue to fight for better diagnosis and care, as well as adequate insurance, addressing the insidious and horrific effects this disease may have on individual lives.”

Mrs Shaw is hoping for similar results from the rally, which had more than 250 in attendance even on a day when skies kept threatening to open up.

“Almost everyone knows someone with Lyme disease,” she said. “In Newtown, I know one little girl who is homebound with it. Another little boy was being bused out of the school system because of resulting psychiatric problems. He couldn’t work within the mainstream for the longest time.

“A few years ago, school nurses pulled 158 ticks off students during one school year,” she said.

“This is a multisystem disease,” she pointed out. In the early stages of Lyme disease, patients may experience flulike symptoms that can include a stiff neck, chills, fever, swollen lymph nodes, headaches, fatigue, muscle aches, and joint pain. They may also experience a large, expanding skin rash around the area of the tick bite.

Skin problems, the most common symptom, can include an expanding circular rash at the site of the bit, rashes developing on other parts of the body as the infection spreads, swelling in the earlobes and near the nipples, and severe thinning of the skin on the hands and feet.

Joint problems include brief episodes of pain, redness and swelling, especially around the knees. Early nervous system problems can be caused by nerve inflammation. Joint and muscle pain are early signs of Lyme disease.

Heart problems, while rare, can include a slow or irregular heartbeat (arrhythmia).