After working nearly 30 years to pass major legislation to research treatments for Lyme disease, the tick-borne infection that causes more than 300,000 illnesses each year, Democratic Rep. Chris Smith of New Jersey is newly optimistic about a breakthrough.
The Senate Health Committee voted Thursday on a bipartisan basis to advance the upper chamber’s version of Smith’s bill after Republican Sen. Susan Collins of Maine renamed it to honor the late Sen. Kay Hagan, a North Carolina Democrat who died on Oct. 28 of complications from the tick-borne disease called Powassan virus. The legislation would require the Department of Health and Human Services to develop a national strategy to counter Lyme disease and boost funding for research, including a new $20 million-a-year funding stream to state governments through the Centers for Disease Control and Prevention.
The Kay Hagan Tick Act and Smith’s companion bill in the House are the first pieces of legislation to address tick-borne diseases exclusively.
“I’m very optimistic for the future because so many other diseases have been close to eradicated. And now we have a blueprint at hand that I think will lead to the end of this epidemic,” Smith told the Washington Examiner.
Smith began crusading for more federal Lyme disease research in 1992, when he first urged the CDC and National Institutes of Health to look into Lyme prevention and treatment measures. In 1998, he introduced the Lyme Disease Initiative Act to create an affordable Lyme detection test, a case reporting system, and education efforts for doctors to better understand and treat Lyme disease. He introduced the bill in seven subsequent sessions of Congress, but it never passed.
Yet, Smith’s battle was only beginning. He became even more dedicated six years ago when his then-35-year-old daughter was diagnosed with Lyme disease, right as he was pushing, successfully, to include a measure setting up a Lyme disease working group between the CDC and NIH within a larger bill meant to modernize the NIH and address the opioid epidemic, the 21st Century Cures Act, signed into law in 2016.
Smith told the Washington Examiner that seeing his daughter deal with debilitating brain fog and nerve pain spurred him to work even harder.
Each person reacts to the bacteria that causes Lyme disease differently. Symptoms of Lyme mimic those of the flu, including fatigue, headache, fever, and joint pain. Lyme symptoms become more severe the longer it goes untreated, though. For instance, people often get rashes and nerve pain, as well as cognitive problems, including poor concentration and memory lapses. Few doctors can recognize the symptoms of Lyme, especially in the early stages of the infection, so many people don’t know they have Lyme disease until symptoms become debilitating.
Unlike many patients who are misdiagnosed time and again and given the wrong kind of treatment — often a course of antibiotics — his daughter saw doctors who knew what Lyme looked like and the treatment it requires. Many doctors, Smith said, don’t have training in Lyme symptoms and best treatment.
Although his daughter is now in remission, her illness impelled the congressman to channel energy into drafting legislation to stop Lyme disease and to secure support from as many legislators and administration officials as possible. He believes his work is near paying off.
With the Senate advancing the bill at the committee level, now he needs to get momentum behind his House version, the Ticks: Identify, Control, and Knockout Act, or TICK Act.
He introduced it on June 3, and as the Energy and Commerce Committee has yet to take it up, he is looking for other legislative vehicles to advance it.
“We in this office, staff and member alike, are absolutely tenacious. We get told ‘no’ on everything all the time,” Smith said.
He also credited President Trump and the administration for taking an interest in the issue, a development eased by the availability of the new statistics about the prevalence of Lyme disease cases thanks to the 2016 Cures Act.
“The working group validated with great specificity what we’ve been saying for 15, 20 years … but that’s not worth the paper it’s written on if there’s not an action following it, and that’s where the Trump administration has come in, full-scale,” he said.
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