Patients who suffer from Lyme disease joined advocacy leaders and U.S. Rep. Chris Smith (R-NJ) at a press conference Friday to mark the launching of the National Institutes of Health’s (NIH) new national research strategy to combat Lyme disease. 

Priorities in the NIH multipart plan include the five pillars of: expanding knowledge of tickborne diseases; developing rapid diagnostic testing; identifying treatment success and human biomarkers of persistent symptoms; developing new treatments; and evaluating prevention approaches such as vaccines.

“Everything that was embedded in our first bill in 1998—and every bill thereafter—is captured in the five pillars in the NIH plan,” Smith told reporters and a group of Lyme patients and their families. “We have waited for this initiative for a long time, but in launching this effort, NIH appears to be forging ahead for researching Lyme and other tick-borne diseases to better diagnose and treat those suffering from this horrific disease,” said Smith, who has led federal efforts to combat Lyme disease for more than 27 years. He noted the NIH plan reads like the text of several of the bills he has introduced over the years pushing the federal government to establish a responsive, comprehensive, scientific strategy to help those gravely ill from Lyme and other tick-borne diseases.

Smith, the co-chair of the congressional Lyme Disease Caucus, is also the author of the pending TICK Act (HR 3073), which will develop a whole-of-government National Strategy to prevent and treat Lyme and other vector-borne diseases. Smith’s legislation would create a new Office of Oversight and Coordination for Vector-borne Disease in the Department of Health and Human Services coordinating strategies across the entire federal government—including the NIH, and also the Departments of Defense, Agriculture, Interior, Homeland Security and the Environmental Protection Agency.

“We have a bill called The Tick Act which would codify the idea of a national strategy,” Smith said. He noted that the fight against Lyme disease is “surging administratively,” and thanked the Administration for directing federal agencies to see how Lyme disease can be addressed within their own departments.

In releasing its Strategic Plan for Tickborne Disease Research, the NIH said the effort was inspired in part by the 2018 Report to Congress by the HHS Tickborne Diseases Working Group (TBD Working Group). Smith spearheaded the legislation that created the TBD Working Group, which became a provision (Section 2062) of the 21st Century Cures Act.

“The Tickborne Disease Working Group met for months and came up with a report that demolished the myths about Lyme disease, like that chronic Lyme disease doesn’t exist. The report recognizes that current diagnostics are totally inadequate. In terms of diseases and disabilities, it shows there is no other disease or disability that is as underfunded than Lyme disease. The Working Group Report has become the marching orders in the fight against Lyme disease,” Congressman Smith said.

The event was hosted in the courtyard of the Wall Township Municipal Building by Mayor Keven Orender and Deputy Mayor George Newberry, who are among the many officials from New Jersey towns who have residents with Lyme, like Pat Smith (no relation to Rep. Smith), a Wall resident who is the President of the Lyme Disease Association, and an appointee on the federal TBD Working Group.

 “I have worked with Congressman Smith for 27 years to get the attention needed for Lyme,” Ms. Smith said. “Working on our 2018 TBD Working Group Report, we discovered NIH had no national strategy on Lyme and tick borne diseases. The Report to Congress recommended that one be developed. Two weeks ago, NIH released a comprehensive TBD research strategy which outlines what kinds of research needs to be done to help patients and to stop the spread of the disease.”

She called the NIH action “a good first step,” and added “we also need passage of the TICK Act to bring all tickborne disease under one office of government and to generate necessary funds for a comprehensive research plan.”

Also addressing the media was Dr. Jodie Dashore, Ph.D., of Marlboro, an expert in integrative medicine specializing in neurology, who cares for Lyme patients from 40 countries. She noted the possibility of a connection between Lyme disease and autism.

“New Jersey has a large population of people diagnosed with Lyme disease and—here’s the key—a large number diagnosed with autism spectrum disorder,” she said, estimating that 65 percent of her child patients with autism test positive for Lyme disease.

She said more research into Lyme was needed, and was supportive of the NIH announcing its national research plan.

"Clinical research is urgently needed for accurate testing of the multiple genospecies and multiple strains of organisms, along with human genetic and immunologic risk factors associated with tick borne illness,” Dashore said. “Early diagnosis, reliable testing and effective treatment strategies help contain the immunosuppressive complex biological expression of the disease thus preventing a prolonged and debilitating illness with a large socio-economic impact."  

Also speaking at the event were Lyme patients Debbie Scatuccio of Jackson, a mother of two children with Lyme and grandmother of two with Lyme, and Brian Dashore, son of Dr. Dashore, who contracted Lyme at age six and has struggled with chronic Lyme.

Brian, a senior at Monmouth County Academy of Health and Science, hopes to become an immunologist, in part because of his own battle with Lyme disease.

“I am motivated by my own experience with the disease and because the health care field is so interesting,” Brian said. “I’ve mentored kids with Lyme,” he said, discussing such issues as bullying, extended days out of school sick, and his own experiences including pain, brain fog and fatigue.

Scatuccio said the NIH research plan was “a long time in coming,” and was happy the TICK Act was sponsored by her own member of Congress from New Jersey, Rep. Smith (R-NJ), with the lead cosponsor a member from her former state of residence Minnesota, Rep. Colin Peterson (D-MN). Smith and Peterson co-chair the Lyme Disease Caucus on Capitol Hill.

“It was very important it was bipartisan,” Scatuccio said. “I am proud that the two Members of Congress from the two states which are dearest to my heart, are helping our country. The people of the United States deserve to get the right care.”

Dr. Robert C. Bransfield, M.D, Clinical Associate Professor at Robert Wood Johnson UMDNJ Medical School, President of the International Lyme and Associated Diseases Educational Foundation who has worked with Smith on Lyme issues in the past, said that the main cause of death from Lyme disease is suicide and a major cause of disability from Lyme disease are mental and cognitive impairments.

“Many who see themselves as authorities on Lyme disease have little training in psychiatry and are unable to comprehend how a tick bite can result in mental illnesses,” Bransfield said.