The first federal Lyme bill was introduced 11 years ago. The Lyme disease community still has not passed a federal Lyme bill. Why not? Learn about the history of Lyme legislation, the legislative process, and our own part in the drama. CALDA founder and president Phyllis Mervine shares experiences and insights from her decade of involvement with various reincarnations of the federal Lyme bills.

Once upon a time…

the FDA approved the LymeRIX vaccine, with over $260 million in sales anticipated by 2002. It was 1998, the same year that Rocky Mountain Lab research scientist Dave Dorward, at the annual Lyme Disease Foundation conference in New York City, electrified viewers with his stunning video of a live Borrelia spirochete penetrating a lymphocyte and cloaking itself in lymphocytic membrane as it emerged on the other side. In 1998 SUNY researcher Ray Dattwyler testified at a July 30 FDA meeting that “three weeks [of treatment] seems to have been adopted, although I think that is somewhat arbitrary.”

It was in May, 1998, that Chris Smith (NJ) and Chris Dodd (CT) introduced the first federal Lyme bills, HR 3795 in the House and S. 2034 in the Senate, asking the federal government to provide $100 million over five years to the CDC, NIH, and the Dept. of Defense to develop an effective test, educate doctors, improve the surveillance and reporting system, promote earlier diagnosis of Lyme, and form a federal Lyme disease advisory task force.

“The objective of this bill is to put us on the path toward eradicating Lyme disease,” he began. “Various agencies have made a good start in addressing Lyme disease concerns. These efforts have been hampered, however, by a lack of interagency coordination, inconsistent funding and limited agency staff attention.”

The bill language went on to describe public health goals in a five-year plan, goals which would by now have been completed, had we passed that first bill. The bill gained 30 cosponsors in the House and five in the Senate. Fifty-seven Lyme disease organizations and leaders across the country endorsed the bill, thanks in large part to the tireless efforts of Patricia Smith, then president of the Lyme Disease Association of New Jersey.

Companion Bills

Congressmen and senators, Republicans and Democrats. worked together on the language to make sure we had “companion” bills, as they are known. Having companion bills is important. As a bill makes its way though various committees, legislators often make changes. By the time the bill reaches the floor, it may be quite different from its “companion” in the other house. When this happens, the Conference Committee must resolve the differences before final passage. Obviously, the closer together bills are at the start, the less likely they are to need much “conferencing” at the end of the process. Companion bills are the best; at least they start out the same.

In 1998 the Lyme bills in both houses of Congress were the same. Senators and congresspeople of both parties were working together. But because the bills were not introduced until part way through the second session of the 105th Congress, they died in committee before they could be acted upon. Although the Lyme disease community would have to “start over,” we were still hopeful because we had a bipartisan coalition in Congress and the bill authors had promised to reintroduce the bills the following year.

They made good on that promise, but the end of the story wasn’t going to be, “They lived happily ever after.” At least not yet.