It was 2005, the first session of the 109th Congress. There were two competing bills in the House, and no Senate bill. No one knew what the senators would do. All we could do was wait… and hope. Finally, we had our answer, but the landscape was shifting. It might be impossible to pass legislation, even if everyone united behind a single bill.

This is the seventh  part in a series. CALDA founder and president Phyllis Mervine shares experiences and insights from her decade of involvement with various reincarnations of the federal Lyme bills.

Recap:  The Lyme community was divided, and there were two competing bills in the House. No one knew what the senators would do. All we could do was wait.

Into the Fire

After two months of suspense, we had our answer. On July 25, 2005, Senators Dodd and Santorum “dropped” (introduced) S. 1479, the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005. Those senators deserve credit for “hanging in there” with a divided and conflicted community. The whole situation must have looked like a legislative minefield, “Damned if you do, damned if you don’t.”

The new bill had addressed the major concerns and former LDI-backers immediately signed on. The next day, on July 26, 2005, Cong. Smith and Sue Kelly “dropped” HR 3427, a companion bill, giving the identical bills the best chance of passage. We started to see light at the end of the tunnel.

Because LIFT had been active for eight weeks, it had already gained a number of cosponsors. Advocates would now have to contact all these legislators again and ask them to sign onto the new bill. Advocacy groups like CALDA helped patients formulate letters to explain the complicated situation to their legislators. “You have signed onto HR 2526, which we have abandoned, so we hope you will sign on to HR 3427 as well.” It was a less than ideal situation and valuable time was lost, but people started to contact their legislators.

In the second Congressional session, starting in January 2006, the Lyme Disease Association kicked into high gear with a series of action alerts, a legislation action kit with “talking points,” a FAQ, and sample letters. CALDA assisted in distributing alerts through their online state network and LymeNet was busy, too. Hours of work went into helping and encouraging people to contact their legislators.

By the end of the 109th Congress, ninety nationwide groups supported the bills and HR 3427 had 83 cosponsors and S 1479 had 12, a new high. But both bills were still stalled in their respective committees. It looked like another failure. But in actuality, the LDA coalition behind the bills emerged from this battle much stronger. People were beginning to realize the enormity of the effort required to pass legislation, especially in the current climate. Many were tired of the rollercoaster. This graph shows the situation as it looked at the end of 2006 and on into the next Congress, when we again had two companion bills. To tired advocates, it looked like 2007 might be the Year of the Lyme Bill.

But as the patient community struggled to get its act together, the landscape was becoming more hostile. Even as we adjusted to the enemy within, the enemy without would increasingly challenge patients’ future attempts to pass legislation.

At their 2004 annual meeting in December, the Infectious Diseases Society had passed a resolution to oppose patient legislative initiatives. On June 28, 2005, IDSA president Walter Stamm, MD, immediately made good on that promise by writing to Pennsylvania legislators, urging them “to oppose the enactment of Pennsylvania House bill No.1534, known as ‘The Lyme and Related Tick-Borne Disease Education, Prevention, and Treatment Act.’”

“The legislation is based on ill-informed assertions that are not science-based,” Stamm continued. “We are most concerned about the potential this legislation holds for engendering practice patterns that are detrimental to the health of patients. Of greatest importance, IDSA opposes the bill’s misguided attempt to legislate the prolonged use of antibiotic therapy for Lyme disease.

Stamm enclosed a copy of the IDSA practice guidelines and invited the governor to contact “IDSA’s director of public policy and government relations” if he had further questions.

Had we missed our crucial window of opportunity to pass Lyme legislation under the radar? Only time would tell.

Next time: Shark-infested waters

To research bills on the Web, go to the Thomas website, click on Search Multiple, Previous Congresses and then choose the Congress you are interested in. Type “lyme disease” into the search box and click on SEARCH.