New National Lyme Research Initiative has roots in New Jersey
MONMOUTH COUNTY, NJ: At a press conference held last Friday, October 25th, in the courtyard of the Wall Township Municipal Building, U.S. Rep. Chris Smith (R-NJ), formally acknowledged and praised the recent launching earlier in the month, of the National Institutes of Health’s (NIH) national research strategy to combat Lyme disease.
Smith also expressed his frustration for the amount of years that it took to get to this point.
Smith was joined at the press event with patients who suffer from Lyme disease, and also in attendance were Lyme research and treatment advocacy leaders.
U.S. Rep. Chris Smith (R-NJ), the co-chair of the congressional Lyme Disease Caucus, has been working on advancing research, treatment and funding for Lyme's Disease since 1992, when Smith first met with top medical and health officials to discuss the topic in Washington.
Then in 1998, Congressman Smith co-sponsored the Lyme Disease Initiative Act of 1998, to establish a program to provide for a reduction in the incidence and prevalence of Lyme disease. Smith has been a tenacious early leader in the fight against Lyme disease, a leader in the effort to combat Lyme disease for over 27 years.
Congressman Smith commented, “Everything that was imbedded in our first bill in 1998—and every bill thereafter—is captured in the five pillars in the NIH plan. 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.
Smith mentioned that the new NIH plan reads like the content 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.
Dr. Jodie Dashore, Ph.D., of Marlboro, an expert in integrative medicine specializing in neurology, who cares for Lyme patients from 40 countries, was also present and spoke at the event. Dashore's son Brian was present in the audience to share his story. His is one riddled with multiple misdiagnosis, and a crippling near-death journey with chronic Lyme disease. Watch TAPinto's one-on-one breakout interview with Dr. Dashore:
VIDEO-Hear Dr. Dashore's powerful testimony:
Dr. Dashore also spoke about the link established between Lyme disease and autism. Her plant based treatments have successfully treated patients with Lyme disease and also many with an autism diagnosis. “New Jersey has a large population of people diagnosed with Lyme disease—and here’s the key—New Jersey has a large population of people diagnosed with autism spectrum disorder,” she said, estimating that 65 percent of her child patients with autism have Lyme.
She said more research into Lyme was needed, and was supportive of the NIH to kick off 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."
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.
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.
Also, at the press conference to speak was Patricia Smith, president of the national Lyme Disease Association, and parent of a child who contracted Lyme disease. “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.”
VIDEO-Listen to Patricia Smith, president of the national Lyme Disease Association:
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 speaking at the event were Lyme patients Debbie Scatuccio of Jackson, a mother of two children with Lyme and grandmother of two with Lyme. Brian Dashore is a senior at Monmouth County Academy of Health Science. He 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, 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.