The National Institutes of Health’s (NIH) new national research multi-part plan includes five pillars: expands knowledge of tickborne diseases, develops rapid diagnostic testing, identifies treatment success and human biomarkers of persistent symptoms, develops new treatments and evaluating prevention approaches such as vaccines and strengthen therapeutic security.
“Everything that was embedded in our first bill in 1998 (The Lyme Disease Initiative of 1998) and every bill thereafter is captured in the five pillars in the NIH plan,” Smith said. “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.”
The NIH plan mirrors several other bills Smith has introduced over the years which have put pressure on the federal government to establish a responsive, comprehensive, scientific strategy to help those gravely ill from Lyme and other tick-borne diseases.
“This is a chronic and ever expanding disease and it has a lot of other co-infections, not just Lyme disease, but the ticks are carrying a hybrid of sickness and pathogens,” Smith said.
Representative Smith has had continued conversations with various groups and individuals in Washington pushing for more funding and research.
“The new strategy will lead to a very serious increase in how much we spend for research, currently at about 30-million dollars, but it needs to be tripled if not quadrupled to get to that critical mass of research that will find a cure and a diagnostic that works because right now most people get false negatives and are told they don’t have it from the tests being administered by most doctors,” Smith said. “The physicians would be better educated under this new initiative.”
The NIH said this Strategic Plan for Tickborne Disease Research was inspired in part by the 2018 Report to Congress by the HHS Tickborne Diseases Working Group (TBD Working Group).
Congressman 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,” Smith said. “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 new national plan has a focus on eliminating false negatives people receive on tests for Lyme disease due to faulty diagnostics.
“There’s no uniformity, there’s no sense of ‘this is what works’ so NIH is now going to deploy real and serious funding in prioritization to finding a treatment that will cure the disease,” Smith said.
He said there needs to be a more uniform way that Lyme disease is treated.
“Most doctors were told that if you give one month of antibiotics that’s the end of Lyme disease but that is unmitigated nonsense, it is totally false and yet that’s been the modus operandi for decades,” Smith said.
Lyme disease is easy to catch, Smith says, but difficult to treat if it’s not caught in the first few weeks or months, as it becomes more challenging to extract chronic Lyme disease out of the body the longer it lingers.
Smith, the co-chair of the congressional Lyme Disease Caucus, is also the author of the pending TICK Act (HR 3073), which will develop ways to prevent and treat Lyme and other vector-borne diseases.
“The idea is to have a whole-of-government National Strategy,” Smith said.
This 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, as well as the Departments of Defense, Agriculture, Interior, Homeland Security and the Environmental Protection Agency.
*Disclaimer: The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of LymeNow or the LymeNow community.