North Country senators highlight state’s effort to combat Lyme disease
Friday, October 27, 2017 - 6:08 am

The State Senate has released a report aimed at combatting the spread of Lyme and tick-borne diseases, according to North Country state senators Sen. Betty Little, R-Queensbury, and Joseph Griffo, R-Rome..

Little represents the 45th senate District, which includes the St. Lawrence County towns of Piercefield, Colton, Hopkinton, Clare, Parishville and Lawrence, and the entire counties of Franklin, Clinton, Essex, Warren and Washington. Griffo’s 47th District includes a swath running through the middle of St. Lawrence County, from Massena to Fine, including Potsdam.

The report is based on findings drawn from a public hearing held in Albany this past August and points to the need for a statewide plan that prevents infection and empowers patients.

“It’s not just Lyme disease, but many other tick-borne illnesses for which we need to formulate a more effective public health approach to address,” said Little, a member of the Senate’s Task Force on Lyme and Tick-Borne Diseases. “The emergence of Powassan virus in our state has brought the sense of urgency to a new level.”

Little said the senate’s public hearing convened medical professionals, insurance industry representatives, patients, and advocates to develop effective solutions to empower patients and prevent New Yorkers from contracting the diseases.

“This is a serious public health issue across the state," Griffo said. “While we remain one of the hardest-hit regions for such diseases, my colleagues and I in the Senate have been actively working to reverse this trend. I am looking forward to making even more progress in the days and months ahead.”

Testimony provided by patients at the hearing painted a grave picture of life with a tick-borne illness. Patients described agonizing pain, dangerous loss of memory and motor skills, financial ruin as a result of a severe lack of effective treatment options, and more. A common theme that ran throughout patient testimony was the rampant inaccuracies plaguing the test currently used to detect TBDs, with some suffering with symptoms for years before an accurate diagnosis and treatment.

The report includes a recommendation for the state to create specific protocol when it comes to notifying individuals of their diagnoses. Little is cosponsoring legislation that would require the state to develop that specific protocol to guide providers in properly diagnosing and treating Lyme and TBDs and require them to provide patients with a notification form to better educate them about their test results.

New York State has the third highest number of confirmed cases of Lyme disease in the entire country, according to reports by the Centers for Disease Control (CDC). The report highlights the immediate need for a statewide action plan, as well as a legislative commitment to empowering patients and funding critically necessary research to reduce the tick population.

It is commonly accepted that Lyme disease can be effectively treated with antibiotics if detected early. However, as was discussed by many hearing witnesses, the test used to detect Lyme disease is simply not reliable. Too often patients are led to believe that they are in the clear after receiving a ‘negative’ serology test for Lyme disease, which ultimately delays critical treatment resulting in worsening— sometimes irreversible—symptoms.

The senate bill would arm patients with information they need to more effectively advocate for themselves and receive swift, effective treatment.

Additionally, the Task Force recommends the following:

• Creation of a statewide action plan and dedication of significant funding in preparation for the 2018-19 Executive Budget cycle;

• Reinstituting the NYS Health Quality Cost Containment Commission to accurately assess the cost of insurance and consider coverage for long-term treatment of symptoms;

• Promote testing in children who present with TBD-related symptoms to ensure swift treatment and avoid the long-term consequences of misdiagnosis;

• More effectively utilize proven information systems, information technology and social media to increase awareness about the dangers of Lyme and TBDs; and

• Actively pursue outside funding to invigorate critical research.