Tick Act passed by Congress, but how much of $150M goes to Lyme disease research? The potential breakthrough, after years of federal inaction, has roots in Monmouth County. How will the money be spent?

Jerry Carino | Asbury Park Press

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It might have gone unnoticed by the public at large, but included in the massive spending package Congress passed Thursday was a bill of great importance to advocates for Lyme disease sufferers.

The Kay Hagan Tick Act, which provides a total of $150 million in funding over the next five years to combat tick- and vector-borne diseases, has roots in Monmouth County and is a potential game-changer for the Lyme community after decades of neglect by federal health authorities.

The key word there: potential.

“I’m happy that finally, after many years of different bills trying to get something going, we have something that’s going to provide some monies,” said Wall resident Pat Smith, a member of the federal working group whose recommendations fueled the legislation. “But I’m waiting on what’s really going to happen when the monies get appropriated.”

Smith is concerned because of changes that took place after the bill was co-sponsored in the House of Representatives by U.S. Rep. Chris Smith — a Republican whose district includes parts of Monmouth, Ocean and Mercer counties — and Democrat U.S. Rep. Collin Peterson of Minnesota.

"There are some language changes that were made in the Senate to the bill, so of course we will keep an eye on the appropriations process that will take place in 2020," said Pat Smith, who is president of the national nonprofit Lyme Disease Association. "But our hope and expectation is that Lyme will get the lion's share of the funds"

One notable change? The word "Lyme" was struck from the record after appearing 30 times in the original draft.

Rep. Smith, who has tried to get tick legislation passed since 1998, said by phone that "Lyme disease will be robustly funded" and added, "I've met with every key player on this many times."

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Among those Rep. Smith cited as ready to prioritize Lyme: Centers for Disease Control and Prevention director Robert R. Redfield; Anthony Fauci, infectious diseases point person for the National Institutes of Health; and Joe Grogan, a key domestic policy adviser to President Donald Trump.

"The president has committed to doing a White House conference on tick-borne diseases," Rep. Smith said.

As the Tick Act wound its way through Congress, the Senate removed a key stipulation Pat Smith had fought for — that funding would be distributed based on the “burden of disease.” That means Lyme, with 300,000 new cases reported each year, should be prioritized over far less common but more publicized vector (mosquito) diseases like Zika and West Nile Virus.

"It is our hope that this is still what will occur," Pat Smith said.

Trump is expected to sign the bill into law by Friday.

"Now of course we have to follow through," Rep. Smith said of the appropriations process. "But I’m beyond confident that this (funding) will absolutely be directed primarily toward Lyme disease and tick-borne diseases."

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It's a matter of particular interest in New Jersey, a Lyme hot spot with an estimated 40,000 new cases each year. For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult, and for some the symptoms continue for months or years.

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The influential Infectious Diseases Society of America has declined to recognize chronic Lyme in its clinical practice guidelines, so sufferers are left to find a “Lyme-friendly” doctor, which is not easy. Earlier this year the National Institutes of Health signaled a shift in the federal government's approach, announcing a strategic plan for tick-borne disease research.

The Tick Act seeks to build on that through Centers for Disease Control grants to health departments in the most at-risk states. It also would re-authorize funding for Regional Centers of Excellence in Vector Borne Disease and require the Department of Health and Human Services to develop a national strategy.

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“The national strategy provision coupled with $150 million for research, prevention and treatment programs will enable additional federal agencies to step up and coordinated their efforts in the fight against Lyme,” Chris Smith said. “The new law will open doors to innovative therapies, treatments, better diagnosis and more accurate information for doctors, and their patients with Lyme.”

Once funds are appropriated, how would Lyme experts like to see them used? A top priority is improving detection; the current test for Lyme is notoriously unreliable.

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Jodie Dashore, a Lyme-literate naturopathic practitioner and clinical herbalist whose practice BioNexus Health Clinic is based in Marlboro, said more must be done for patients who don’t respond to the standard course of antibiotics.

“There are so many,” Dashore said. “I see them from almost every state in the country, and also Canada and the United Kingdom. Most Lyme specialists are overwhelmed. I myself am booking into April right now, and I work seven days a week.”

Dashore, who has a a doctorate in integrative medicine, has experienced the Lyme scourge from all sides. She and her teenage son Brian Dashore, who is a senior at the Academy of Allied Health and Science in Neptune, both contracted Lyme disease and suffered symptoms for years.

“Nothing really hits home until it hits your home,” Jodie Dashore said. “Looking at the exponential rise in Lyme cases, that day really isn’t far off. There will come a time when everyone will know someone with Lyme, unfortunately.”

Jerry Carino is news columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.