APP story on Federal Tick-Borne Disease Panel, the 'Brainchild' of SmithLyme disease: Federal panel recommends testing overhaul, more changes to Congress'
It’s time to develop a better test for Lyme disease.
That was the most pressing recommendation of a report to Congress by a federal working group convened to address tick-borne diseases. The 100-page report, the first of three over a four-year period, is crucial because it represents consensus on how to deal with Lyme after decades of disagreement among government officials and medical experts.
The discord, advocates for Lyme patients say, caused an explosion of cases throughout the country.
“It’s a good first step,” Wall resident Pat Smith, a member of the 14-person working group, told the Asbury Park Press. “Hopefully we will break this gridlock that we have on Lyme disease. Patients are still having difficulties and doctors are having problems trying to treat them. I hope this will be an eye-opener for Congress.”
Smith is a leading advocate for Lyme disease patients. In the 1980s Lyme afflicted two of her daughters, one of whom missed four years of school. She founded the nonprofit Lyme Disease Association and has traveled the country to raise awareness.
“It’s pretty exciting that this report has been issued,” she said. Now the big question is, what is Congress going to do in light of these recommendations?”
The report contends that, because of poor diagnostics, the number of actual cases is 10 times greater than the number of reported cases. So in 2017 there were 420,000 new cases of Lyme disease nationally and 36,000 in New Jersey, which ranks third among all states.
Monmouth County is one of the Garden State’s epicenters of Lyme. The federal working group was the brainchild of Rep. Chris Smith, whose district includes most of the county.
“Lyme disease is having a direct, devastating impact on my constituents, and through countless meetings, advocacy, and pieces of legislation, I have been working to address the needs of the Lyme disease community,” Rep. Smith said in a statement on the working group’s report.
Rep. Smith also called for “for a coordinated, comprehensive federal response, including more funding of research,” in response to the report.
Atop the list is testing. The report outlines the shortcomings of the standard practice of testing for Lyme through “serological assays,” or blood tests that look for antibodies. This form of testing is notoriously unreliable in detecting Lyme, especially in the crucial early stages of infection.
The report recommends federal investment into the development of new testing techniques. It also suggests exploring specific ways to better test children, whom are believed to comprise as much as half of the infected population.
“The most significant thing, one everyone agrees with, is we need new kinds of testing for Lyme disease,” Pat Smith said. “We also need new kinds of therapeutic options for both acute Lyme and those with persistent illness.”
Another focus of the report: The national surveillance system for tracking cases of tick-borne illnesses needs to be strengthened.
“Right now, quite frankly, it’s a mess,” Pat Smith said, “even (in terms of recording) what kind of ticks we're looking at in different states.”
The report also includes stories of people who suffer from tick-borne illnesses. After years of helping desperate patients cope with the horror stories of a widely misunderstood illness, Pat Smith wanted the report to reflect some of Lyme’s human toll.
“That talks about what patients are experiencing in trying to get diagnoses and treatment,” she said. “All kinds of issues are being brought to the forefront for a change.”
This story was originally posted on Nov. 15, 2018 on APP.com and was posted on this website on Nov. 15, 2018.https://www.app.com/story/news/health/2018/11/15/lyme-disease-congress/2010815002/