Lyme, tick-borne diseases exploding in NJ: Smith

Lyme Disease and other tick-borne threats are exploding. And people in New Jersey —especially Monmouth and Ocean Counties — are among the hardest hit, causing disability and severe neurological consequences for thousands, many of whom don’t even know they have the disease or have been misdiagnosed.

According to the Centers for Disease Control, which believes that Lyme disease is undercounted by approximately a factor of 10, 36,429 cases of Lyme were reported nationwide in 2016, the last year for which official numbers are available. In New Jersey alone, 4,350 cases were reported. But taking into consideration the factor of 10, the number of actual cases skyrockets to 43,500 people in New Jersey and 364,290 people nationwide.

For several years, far too little federal support has been directed toward prevention, detection and cures of tick-borne diseases like Lyme.  Making matters worse, some suggest that chronic Lyme disease doesn’t even exist, despite compelling evidence from patients, medical doctors, researchers and advocates.

Yet despite huge numbers of new and existing cases, we don’t even have a reliable diagnostic tool — a gold standard test — for Lyme and other vector-borne diseases, causing many to falsely believe they are disease free.

Lyme disease patient Debora’s ordeal with the disease illustrates what far too many people have gone through. In the late 1980s, Debora, then a resident of Howell, was doing yardwork when she was bitten by a tick on her eyelid. She developed a bull’s eye rash — though many of those infected with Lyme will not develop a classic bull’s eye rash — and flu like symptoms, and went to her doctor, who told her it was nothing to worry about and sent her home without medication.

Over the next five years, Debora went to 23 doctors, who diagnosed her with everything from ALS and Lupus to “Housewife Syndrome.” One doctor derisively told Debora’s husband that his wife was “just being a brat.” During this time, her two young children were both bitten by ticks as well, developed rashes and were eventually diagnosed and treated for Lyme. Finally, when Debora’s condition deteriorated to the point of organ failure, she went to her children’s pediatrician, who diagnosed her with Lyme as well. Three years later, she was also diagnosed with Babesiosis, another tick-borne disease.

Over the course of 12 years, Debora’s family paid $350,000 out of pocket for the medical expenses they incurred due to Lyme, forcing Debora and her husband to both work multiple jobs. Even with a diagnosis and years of treatment, Debora’s battle with chronic Lyme and Babesiosis continues, as she still tests positive through serological testing, Polymerase chain reaction DNA testing, and MRI testing showing brain lesions typically associated with Lyme. Unfortunately, Debora’s story isn’t unique.

That is why I recently authored and introduced The National Tick-Borne Disease Control and Accountability Act, comprehensive bipartisan legislation to fight this dreaded disease in a serious and sustainable way.  Among its many provisions, the bill cosponsored by Rep. Colin Peterson (D-MN) will: establish the Office of Oversight and Coordination to create and implement a new national strategy on tick-borne disease; expand and enhance research; develop new and improved diagnostic tests; ensure safety and efficacy of vaccines; develop treatments to cure and mitigate tick-borne diseases; educate the public and physicians; monitor and control vectors and animal reservoirs; hold conferences, symposia and other public meetings; and create a common research bibliography.  

Timing for this legislation has never been more pressing. In August 2017, a new “longhorned tick” from East Asia was discovered in Hunterdon County and now has been found to not only have survived the winter months, but to have spread to other counties. There are reports that the tick has the potential to spread the SFTS (Severe Fever with Thrombocytopenia Syndrome) virus.

Pat Smith, a Wall resident and president of the national Lyme Disease Association,  based in Ocean County, is a member of the Tick-Borne Disease Working Group, established to improve federal coordination of efforts. She is also the co-chair of its Disease Vectors, Surveillance and Prevention subcommittee. She said the creation of a new national strategy for treating and preventing Lyme disease was “critical.”

I’ve worked with Pat, a nationally-known expert on Lyme disease who has fought long and hard to promote awareness and research, since 1992. She and the pioneering work she has done are amazing. I am thrilled that, under my legislation, advocates like her would have an even greater voice at the table in charting our efforts to fight Lyme.

Chris Smith, a Republican congressman representing New Jersey's Fourth District, is founder and co-chair of the Congressional Lyme Disease Caucus.