Asbury Park Press reports on Rep. Smith's town meeting on Lyme Disease
'Rep. Chris Smith implores Trump to investigate explosive Lyme disease allegation'
Jerry Carino, Asbury Park Press
“What can I do about this?” she asked Rep. Chris Smith, an air of desperation in her voice.
That was the tenor of Wednesday’s Congressional Town Meeting on Lyme and tick-borne diseases. More than 200 people, most of them impacted by Lyme or a related ailment, came to hear Smith and his panel discuss the latest in a long-running battle to get chronic Lyme recognized by the medical establishment.
“Massive numbers of people are getting seriously ill from ticks and the federal response to date has been woefully inadequate,” Smith said, later adding, “Never in my 39 years in Congress have I seen such push-back.”
Upward of 300,000 Lyme cases are diagnosed each year in the U.S. More than half are children, and New Jersey is one of the hot spots. 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.
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.
Raw: Rep. Chris Smith on why Lyme disease legislation fails in Congress Jerry Carino, @njhoopshaven
“I can’t tell you how many times I’ve hit my head against a wall about this,” Smith said, citing a litany of bills he sponsored that went nowhere because of what he calls “the flat-earth society” of insurance companies and their bedfellows in Congress.
Now Lyme advocates have a new weapon — an explosive book that alleges the epidemic spawned from an American biological warfare experiment gone awry — and Smith is appealing to President Trump for action.
‘A shocking read’
The book is “Bitten: The Secret History of Lyme Disease and Biological Weapons” by Stanford-based science writer Kris Newby. A chronic Lyme sufferer herself, Newby documents how the U.S. military infected ticks with complex, hard-to-detect pathogens in the 1960s. The book’s linchpin is an interview with late scientist Willy Burgdorfer, who did the infecting and references an accidental release of weaponized ticks that may have ignited all of this.
The relationship between the experiments and the continued denial of chronic Lyme is something Smith would like to see explored further.
“If this (book) this is true — and the documentation is very persuasive — we were doing bio-weapons work that was grossly immoral,” Smith said in an interview with the Asbury Park Press prior to Wednesday’s town meeting. “It’s a shocking read, and I hope it adds to our push. Looking at what happened might help us come up with how we deal with it now.”
“We owe it to the overwhelming number of patients currently suffering from Lyme disease,” Smith wrote in the letter, dated May 14. “These individuals — and the American public — deserve to know the truth.”
Although he has not received a formal response, Smith said his appeal got the attention of members of Trump’s inner circle. If Congress won’t act on his bipartisan bill (H.R. 220) to bump up funding for research — currently a measly $11 million for the Centers for Disease Control and Prevention and $28 million for the National Institutes of Health — he’d like to nudge Trump to enact changes via executive order.
‘No one is helping them’
The blueprint for change is there. A federal working group that includes Wall resident and leading Lyme advocate Pat Smith handed Congress a report last year loaded with recommendations, most pressingly how to strengthen the testing process. It also includes patient stories, like that of an Air Force pilot who had to be mustered out of the service because of Lyme.
“It shows these patients really did have a problem and still do, because no one is helping them,” said Pat Smith, who sat on Wednesday's panel. She was joined by Ben Beard of the CDC and Richard Horowitz, a Lyme-friendly doctor based in New York. Beard said the CDC is studying the relationship between tick bites and red-meat allergies, an emerging concern among Lyme advocates.
Chris Smith spoke of his own daughter, a mother of three and an avid runner, falling ill with chronic Lyme five years ago.
“She had brain fog and her joints hurt,” he said. “She couldn’t get out of bed.”
He looks at the evidence in the book “Bitten,” and in the federal working group’s 105-page report, and sees fresh ammunition in the battle to recognize chronic Lyme.
“Just follow the science,” he said. “People are getting sick.”
This article appeared in the Asbury Park Press on May 30, 2019, and can be found online at: https://www.app.com/story/news/local/communitychange/2019/05/30/lyme-disease-bitten-chris-smith/1212255001/