Rep. Chris Smith’s two decades of pushing for Lyme disease legislation paid off in the form of provisions included in the end-of-year spending bill to fund research and prevention efforts for the illness.
The government-funding bill included several substantive policy provisions: It raised the tobacco purchasing age from 18 to 21, for instance, and repealed Obamacare taxes on medical devices and high-cost health insurance policies.
It also included the New Jersey Republican’s legislation to monitor, treat, and prevent insect-transmitted illnesses, including Lyme disease, Zika, dengue fever, West Nile virus, and more.
“This marks a major victory for hundreds of thousands, especially and including children, who suffer from this horrific disease,” Smith, 66, said on the House floor before the bill passed.
The bill, the Kay Hagan Tick Act, will allocate $150 million in federal funding for regional healthcare research centers and for improving Lyme disease education and prevention initiatives at the local level. Smith hopes it will accomplish what he has long tried to do: Establish a national strategy not only to monitor the number of new Lyme disease cases and promote training programs for doctors, but also to work alongside epidemiologists and researchers in the hope of creating a breakthrough treatment that saves people from the chronic disease.
“The national strategy is key,” Smith told the Washington Examiner. “Once you get that whole-of-government approach… this gets everybody on board.”
He began his work nearly 30 years ago in his home state of New Jersey, which has one of the highest rates of Lyme disease cases in the country. The bill’s passage, he said, has been a long time coming. He started lobbying the Centers for Disease Control and Prevention and the National Institutes of Health to look into treatment methods for Lyme disease in 1992. It wasn’t until 2016 that the CDC and NIH established the Lyme disease working group.
Smith felt a new sense of urgency when his daughter was diagnosed with the disease six years ago. She endured the typical symptoms of Lyme disease, including severe headaches, nerve and joint pain, and debilitating brain fog and fatigue. About 300,000 people suffer the same symptoms each year.
Smith’s daughter had a team of doctors who had been trained in treating vector-borne illnesses, but not everyone with Lyme disease receives the same care. Too often, patients receive the wrong kind of treatment, such as a limited course of antibiotics, because many doctors lack training in identifying and treating Lyme disease and similar insect-transmitted diseases.
Smith said he had received strong support from the Trump administration for his efforts to combat Lyme disease and other vector-borne diseases. He visited the White House in November to discuss his legislation with President Trump and his director of domestic policy, Joe Grogan.
About a week ago, Smith and eight other legislators met with Trump in the White House to discuss the impeachment proceedings, a discussion Smith said lasted about 30 minutes.
“After that, we raised issues. This is the one I raised. He was very engaged, and it’s more than just words. The administration is doing it. It’s something Trump is personally involved with, personally concerned about,” Smith said.
The original TICK Act, introduced in June, was renamed this year after the late North Carolina Sen. Kay Hagan, who died in October of Powassan virus — a disease transmitted by a tick. The Senate companion bill, led by Susan Collins of Maine and Tina Smith of Minnesota, who represent two states with some of the highest rates of Lyme disease cases, stalled in November but was approved Thursday with bipartisan support.
“We were always blocked by the Energy and Commerce Committee, but we just kept working at it, and we’re at the point where the president is signing,” Smith said. “I can’t thank the administration enough. We’ve been trying since 1992.”