The Lyme drama of 2001 was not confined to Washington, DC. In May the New England Journal of Medicine expedited publication for the Klempner trial, and in June major urban newspapers trumpeted the headlines, “Antibiotics don’t cure chronic Lyme disease.” The Fallon study was in danger of being terminated because of low enrollment, and Joseph Burrascano was in the middle of his battle with the Office of Professional Medical Conduct. Then we had 9/11 and the anthrax attacks.

This is the fourth 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: Patients were divided. Legislators were wary.We had two bills in the House, one in the Senate, and a stalemate. Not only did the respective proponents disagree over bill language, they disagreed over tactics. It was hard to imagine how all the differences would be resolved.

Two is a company, three is a crowd

Lyme disease seemed like a minor problem with everything else Congress had to deal with. By November, 2001, LDI had 63 cosponsors, but then activity dwindled to nothing. By November, LIFT had only 24 cosponsors, but they continued to come in slowly over the next year, eventually totaling 38. Only 25 representatives signed onto both bills, which meant 76 supported some form of Lyme legislation. LIFT had 13 unique supporters; LDI had 38.

It was hard not to wonder how we would have done with only one House bill. Apparently this thought occurred to people at the Lyme Disease Foundation. In mid-February, they sent a letter to all LDI cosponsors telling them their bills was flawed, and suggesting they sign onto LIFT.

The opposing sides seemed deadlocked and rumors and recriminations flew back and forth. Finally, to break the impasse, LDA decided to hire a lobbyist. This proved to be a brilliant move. It took months, but the lobbyist talked with all parties and finally brokered a deal. Everyone, including LDA’s Pat Smith and LDF’s Karen Forschner, signed on, and in mid-October, 2002, Senator Dodd introduced an amended version of S. 969.

This new bill looked like both its parents. It established an advisory committee with scientific community members, representatives of “tick-borne disorder voluntary organizations,” health care providers, patients or people with an immediate family member who has a tick-borne disease, and representatives of state and local health departments and national organizations who represent state and local health professionals. It wouldn’t have epidemiologists or a representative from the National Association of County and City Health officials, and it got rid of all the ex officio (non-voting) members of various government agencies like CDC, NIH, Rocky Mountain Lab, and Social Security Administration, although it allowed the Secretary to appoint non-voting members.

The new bill lengthened its scope from two years to five, making appropriations of $10 million each year from 2003-2007. Without going into much detail, it listed three goals: diagnostic test, surveillance and reporting, and prevention. This bill would not need to run the gauntlet in six subcommittees, which had proved a hindrance to HR  1254.

The bill quickly passed the Senate on consent, and on October 28, was referred to the House Subcommittee on Health. Alas, because it was so close to the end of the session, there was no time to act on it or to amend HR 2118 to match, and the bills died. With them went all the letters of support for the legislation Lyme New Jersey activist Bob Zubritsky had labored to obtain, from organizations all over the country: Arkansas Forestry Association, California Licensed Foresters, Coastal Conservation Association, Florida Trails Association, Outward Bound USA, Ruffed Grouse Society, Wildlife Management Institute, and many more. Maybe someone would do all that work again when the bills were reincarnated in the next Congressional session. Maybe.

Next time: The Doldrums

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.