Federal government creating working group to fight Lyme disease

HUDSON FALLS, N.Y. (NEWS10) – Senator Kirsten Gillibrand is announced that the Trump Administration has started to establish a Tick-Borne Disease Working Group to fight Lyme disease.

“Unfortunately, the model of Lyme disease right now is based on science that’s 30 and 40 years old and we really need to bring that up to the present so that we can move forward in a positive way,” Holly Ahern, Associate Professor of Microbiology SUNY ACC, said.

Outdated information about Lyme disease and other tick-borne illnesses is one of the many reasons Ahern is hopeful about the recent establishment of the Tick-Borne Disease Working Group. It’s part of U.S. Senator Kirsten Gillibrand’s Lyme and Tick Borne Disease Prevention Education and Research Act which became law last year.

“The bottom line is nothing ever, ever, ever happens in Washington unless regular people stand up and demand it and that means us. So we have to speak out,” Sen. Gillibrand said.

Sen. Gillibrand says the working group will review all federal activities related to tick-borne diseases and will function as a federal advisory committee to the Department of Health and Human Services. It will gain funding for research, look at ways to decrease tick populations, understand and develop better testing and treatment for tick-borne illness and ways to prevent it. The working group needs patients, researchers, doctors and family members of patients.

“There are people who don’t believe chronic Lyme is real. Well, I can tell you it’s real. We may not know what creates chronic Lyme or why the treatment doesn’t eradicate it, but it exists. If you have patients on that panel, they will assure the doctors.”

Ahern says her daughter fell victim to Lyme and had a difficult road to get treatment.

“I’m also mom to a young woman who gave up five years of her life to this disease. Like so many others, it was unnecessary. The reason why was because she had a false negative blood test result that led down the path of no diagnosis and no treatment until it was too late,” Ahern said.

“There are many false negatives when they dictate those tests. Now that we know of 17 different diseases, those tests aren’t going to be able to detect all 17,” Sen. Gillibrand said.

Sen. Gillibrand and Holly Ahern says it will also be up to advocates to make sure the recommendations eventually made by the working group are followed through and acted upon.

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