I n December 2016, almost 20 years after Congressman Chris Smith (R-NJ) first introduced a federal Lyme disease bill, patients celebrated as Congress passed legislation containing language related to Lyme disease. Buried deep inside the 21st Century Cures Act, a 1000-page bill dealing with multiple health issues, under the subtitle Facilitating Collaborative Research, Section 2062 establishes a Tick-Borne Disease Working Group, which includes all stakeholders, including researchers, government officials, and representatives from advocacy organizations and patients, as well as the doctors who treat them. The creation of a “working group” is the most important feature preserved from every previous version of the Lyme bill.
President Obama’s signature on the bill culminated years of work by Lyme advocates to gain a seat at the table for patients when decisions are made about Lyme disease at the federal level. But it was a bittersweet moment. It had taken almost two decades and the language was pared down to the bare bones
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