By Ellen Frankman
In a year that has found most wooded Northeastern towns crippled by tick-borne illnesses, Southampton Hospital is stepping up to address what many have called a health crisis for the South Fork.
In promoting Bite Back for a Cure, a cross-country bike tour co-sponsored by the Tick-Borne Disease Alliance and Southampton Hospital, the hospital made its first public announcement of its intent to raise funds for the creation of a Center for Tick Borne Diseases that would serve the East End of Long Island.
“It is something that has been mulled over ever since I’ve been here because of the incidence of tick-borne diseases out here,” said Robert Chaloner, the CEO of Southampton Hospital.
But following a particularly aggressive tick season, Chaloner believes the time has finally come to put the thoughts and ideas into action.
“This year has been a particularly bad year,” said Chaloner, who shared that he personally has been forced to use a Doxycycline treatment following a tick bite this summer.
And the hospital has confirmed this uptick. Deborah Maile, Southampton Hospital’s infection control director, found that between January and June of this year 201 blood samples tested positive for Lyme disease, compared to 191 during the same period in 2012. The month of June saw the most significant increases in incidence of Lyme disease, with 160 of the results testing positive for the illness this year. That’s more than double the 72 positive cases reported for June 2012.
On Monday, the Centers for Disease Control (CDC) released estimates indicating the number of Americans diagnosed with Lyme disease each year is around 300,000 — about ten times what was previously believed. The preliminary estimates were presented Sunday night in Boston at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases.
This estimate, according to a release issued by the CDC, is based on three ongoing CDC studies. The first project analyzes medical claims information for approximately 22 million insured people annually for six years, the second project is based on a survey of clinical laboratories and the third project analyzes self-reported Lyme disease cases from a survey of the general public.
“We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” said Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
Chaloner says that because of the growing prevalence of tick-borne illnesses, the doctors at Southampton Hospital are already well equipped and proficient at treating diseases like Lyme, Ehrlichiosis and Babesiosis. But calls from the community have asked for something more.
“People don’t know what to do when they’ve been bitten and the health care system is pretty complicated,” said Chaloner. “If we can create that open door it will hopefully address a lot of the community’s needs.”
Chaloner envisions the Center for Tick Borne Diseases as a resource center rather than a treatment facility. It will ideally serve four purposes: to operate as a place to call when individuals have been bitten, to be a location of ongoing development of information and resources that people can access, to sponsor educational activities and outreach for the community, and to function as an educational tool for other healthcare professionals. Chaloner also conceives of the center as a place were incidences of various tick-borne illnesses will be closely accounted for and monitored.
“I don’t think initially that it would require a major change in the composition of the doctors,” said Chaloner, who expressed hopes of creating a panel of experts comprised of doctors and nurse practitioners who are most informed and interested in tick-borne disease. “But it is important that they themselves stay up to date.”
The limited information that has been made available to the public has already been met with support.
“I’m elated,” said community member Josephine DeVincenzi, who has herself suffered from Lyme disease on multiple occasions. DeVincenzi, of North Haven, said she is particularly welcoming of added educational tools for doctors, who she says still misdiagnose and mishandle testing for tick-borne illnesses. “This could be a clearinghouse for the medical community, for the local community and for the school community. This is a regional issue and I think getting people out here who are more focused and aware is tremendous.”
As the plan stands currently, the center will not initially operate out of designated location but will instead function as phone-based resource with an online component. Though Chaloner admits that he loves the idea of providing a walk-in center for community members, perhaps one day housed within the Wellness Institute, for now he sees the priority being offering help sooner than later. The goal is to have the center up and running by next May.
“Our vision is to make this a service that we would provide free of charge to the community,” said Chaloner, who plans to look to philanthropy and grants to secure the funding for the center. “Some of it we may be able to staff with volunteers. There is always a way to get these off the ground, particularly since a lot of the expertise we already have.”
Assemblyman Fred Thiele has come out in support of the initiative, and expressed a vested interest in its growth going forward.
“I think it is long overdue,” said Thiele. “Our community has been dealing with Lyme disease now for the better part of 20 years. I don’t think there is a family on the East End that hasn’t been impacted in one way or another by tick disease.”
Thiele said that as a resource center, the hospital could provide information on treatment and more complex issues like insurance coverage as related to tick-borne illnesses. But Thiele said that state funding would not be out of the question should the center grow beyond an educational resource to become a treatment facility.
“I hope it is something that can expand in the future,” said Thiele. “And not just for myself but for Senator [Ken] LaValle, I think that this is something we would certainly want to work with Southampton Hospital on to make sure they have the proper funding to get the job done.”
With additional reporting by Kathryn G. Menu.