Some advocates had not been satisfied with the amended LIFT bill that had passed the Senate on consent in 2002. Since many people seemed unclear on the exact provisions of the different versions of the Lyme bills, LDA president Pat Smith wrote a letter clarifying differences between the original LIFT bill and the amended version that the senators had passed.

This is the sixth 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 108th Congress had been slow for Lyme advocates. The two companion LIFT bills, whose language was identical to the substituted Senate version passed in 2002, languished in committee.

Out of the frying pan

The original compromise contained many salient points from LDI and LIFT, she said, but there had been some important changes at the last minute to accommodate certain senators and enable the bill to be passed without discussion. For example, the entire physician education goal from LDI had been removed. No physician education would be addressed in the amended LIFT. The phrase referring to medical licensure boards had been removed. References in the committee section to "provide a public voice" as the purpose of the committee had been removed. Under committee duties, "provide public input on the public’s needs regarding tick-borne diseases" was eliminated. "Tick-borne disease national non-profits" had been replaced with "private organizations addressing tick-borne disorders."

Although advocates had requested and received an extra committee member, all the qualifications for the three doctors who were to sit on the committee had been removed. The term “doctor” itself had been changed to "health care provider" and no experience of any kind was required. They didn’t have to care for people with Lyme disease at all. In contrast, LDI of 2001 had required two “clinicians with extensive experience in the treatment of individuals with chronic Lyme disease and related tick-borne diseases.”

Where the previous bill had stated: "The secretary shall collaborate to carry out" all the goals in the bill, that language had been changed to: "The secretary shall consider carrying out."  Smith felt that the whole premise of the bill was negated with that one new word "consider." “Effectively, the secretary doesn’t have to do any of what’s in the bill,” she said.

So Smith asked the legislators to organize a meeting to work through differences with all the stakeholders and try to come up with better language to better safeguard patient interests. She hoped they could come up with a compromise bill that all groups could support in 2005.

In early May, Senators Dodd and Santorum invited the main players to sit around the table, discuss their concerns, and iron out differences for a new bill. They included representatives from Connecticut’s Time for Lyme and Lyme Disease Foundation, as well as LDA’s Pat Smith and other legislators. Although participants did not reach a final compromise at the meeting, the legislators sent everyone home with an assignment to work on language that would satisfy everyone, with the understanding that legislators would then introduce the compromise bill after everyone was on board. This approach promised to unite the Lyme patient community behind one bill and break the stalemate. After the meeting, everyone went home, supposedly to work out compromise language.

So Lyme watchers were stunned when on May 23, 2005, Sue Kelly (NY) introduced HR 2526, a bill identical to the LIFT of the previous session. The Lyme Disease Foundation immediately issued a press release supporting the bill and urging people to support it.

For a second time, LDA supporters felt like they had been caught flat-footed. They had expected to work out compromise language with LIFT proponents, and now the exact same LIFT bill was back again. But this time, because of concern about lack of precision, dangerous loopholes, and potential risks in the bill language, they felt they had no choice but to reintroduce LDI. It took a couple of weeks, but Congressman Smith and his staff worked out a compromise bill – HR 2877 – and introduced it on June 14, 2005.

We now had two conflicting bills in the House again, and none at all in the Senate. What would the senators do now? Would they reintroduce LIFT? Or LDI? Or something entirely different? No one knew and they weren’t telling.

Next time: Into the fire

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