In March 2001, as planned, Congressman Smith (NJ) introduced the third version of the Lyme Disease Initiative (HR1254 ). The language was almost identical to the language of the previous LDI. Then came the thunderbolt. Instead of introducing a companion version in the Senate, as anticipated, on May 25 Senator Dodd (CT) introduced a totally different bill, the Lyme and Infectious Disease Information and Fairness in Treatment (LIFT) Act, S. 969. The coalition of 90 patient activists and groups who had been working on LDI for the past three years were stunned.

This is the third part in a series where 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 Disease Initiative of 1999 didn’t pass before the end of the second session of the 106th Congress in 2000, so we knew would have to start over in 2001.  We had a total of 56, congressmen and women signed on as co-sponsors and a coalition of over 90 Lyme patient advocates and groups supporting the legislation.  

Storm clouds gather

Behind the scenes, unbeknownst to those activists, Lyme Disease Foundation director Karen Forschner and a small group of followers had lost faith that the Lyme bill could pass in its present form. It had to go through too many committees, she said. She wanted a simpler bill, one that could pass easily. She complained that LDI didn’t have patients on the committee (LDI provided for spouse, caregivers or parents of Lyme patients) and that it had other “fatal flaws.” LDF hired a lobbying firm and contacted Dodd’s office. Dodd agreed to introduce a new, streamlined bill.

Observers wondered about what would happen to the bipartisan team in Congress patient advocates had nurtured and worked with over several years. Previously Smith and Dodd had been teammates working on the same bill; now that team had apparently split up and was going in different directions. Another question was how the two bills would be reconciled. Not having companion bills was a looming obstacle that advocates would eventually have to deal with. One problem was that the Conference Committee would make changes that advocates would have no choice but to accept.

The new bill, LIFT, was indeed simpler, but it made Lyme Disease Initiative proponents nervous. Instead of delineating specific goals, the new bill left the details to the discretion of the future committee and the Secretary of Health and Human Services. The advisory committee was fashioned after the Chronic Fatigue model, which was ineffective, according to chronic fatigue activists. To advocates who had worked hard on LDI to come up with constructive bill language, LIFT sounded like a “feel good” measure that risked using up political capital while delivering nothing substantive.

On June 8 Rep. Greenwood (PA) introduced HR 2118 as a companion bill to S. 969. He had been talking with Mary Halinski, a former LDA Pennsylvania chapter chair now working with Forschner, who with her son Luke ran the Lyme Society in Pennsylvania. Greenwood decided that the best bill for the Lyme community that had a chance of passage was the LIFT bill, not the LDI. LDI proponents thought that amending LDI would have been preferable to introducing an entirely new bill. Smith had introduced LDI early in the session to get the ball rolling and intending to allow amendments, not because the language was written in stone.

But the deed was done. Advocates now had to decide on the spot whether to back the new legislation or hang onto the old bill. People were confused about which bill to support. It looked like an internicene squabble between the major players, LDA vs. LDF. Many people decided not to support either bill until the two sides came together. They demanded a compromise.

The Lyme Disease Foundation defended their bill and sent out a mass mailing to legislators who had supported the LDI bill, telling them that it was flawed and asking them to support LIFT. Most of the LDA coalition decided they had to stick with the better bill, even if it were harder to pass. Some legislators signed on as co-sponsors to both bills. Others avoided the contentious scene altogether. Advocates wondered what would happen in the Conference Committee if both versions passed. They needn’t have worried. Both bills became mired in the struggle.

Next time: Two is a company, three is a crowd

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