The Lyme Disease Initiative (LDI) of 1999 was 1,000 words longer than the 1998 version and packed with details from the community’s wish list. The Lyme wars had already begun. In July, 1999, a representative from the Office of Professional Medical Conduct, the doctor disciplinary arm of the New York Health Department, visited the office of Dr. Joseph Burrascano, Jr., asking questions about his practice. In 1999, Dr. Richard Horowitz of Poughkeepsie, another Lyme specialist, was dropped by Blue Cross/Blue Shield, leaving about 500 of his patients without means to continue treatment. [Lyme Times #26 ] In 1999, USA Today quoted American Lyme Disease Foundation executive director David Weld as saying that people like to have Lyme disease so they can talk about it at cocktail parties.

This is the second 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.

Our second attempt

The 1999 LDI bill had some significant differences from the 1998 version.  Accepting input from patient advocates, the authors (i.e. the legislators) had elaborated considerably on the sections on the detection test and development of “indicators,” which referred to “the development of standardized, periodic (not less than one per year) Lyme disease risk assessments that test and then categorize the overall level of risk of Lyme disease at federally owned lands in endemic States and regions.”

The legislation set ambitious public policy goals for federal agencies, including a 33% reduction in Lyme disease within five years of enactment in the 10 most endemic states. It gave priority development of a detection test for Lyme and co-infections that could accurately distinguish between acute or chronic Lyme disease and measure responsiveness to treatment. To enhance interagency communication, it also added a whole raft of ex officio (non-voting) departmental directors to the task force (such as the Directors of the National Institute of Allergy and Infectious Diseases and of the National Park Service. It raised the appropriations to $25 million a year and included not only NIH, CDC, and DOD, but also the Depts. of the Interior and Agriculture, though for lesser amounts.  This bill had a lot of good meat on its bones.

So we were hopeful when on August 6, Congressman Smith (NJ) “dropped” the Lyme bill, HR 2790, at the beginning of the 106th Congress. (“Dropped” is Washington lingo for “introduced.”) Senator Santorum (PA) “dropped” S-1905. It also seemed auspicious that we would have almost two years to pass the legislation, since the bills had been introduced near the beginning of a two-year congressional session. They were identical "companion" bills, which was also a plus.

After a bill is introduced, it is assigned to various committees, depending on its content. Because of the complexity of this bill, it was assigned to multiple committees, which in turn referred it down to six subcommittees. This complexity can work two ways: it can either mire the bill at the subcommittee level, or, on the other hand, if any subcommittee chairman takes an interest in it, there is the possibility that activity in one subcommittee will inspire activity in another.  An influential chairman can make or break a bill. In retrospect, we did not have that critical advocate. Your bill author is important, but s/he cannot do everything.

The chairman decides whether the committee members even discuss the bill. If they do and pass on it (they may also amend it), the bill goes up to the next level, where it has to compete for attention with any other bill under consideration at that level. At any given time a committee may have as many as 150 bills or more on its list, parceled out to various subcommittees. So the Lyme bills had serious competition. Ideally you want your bill passed out of committee to the House (or Senate) floor where it can be voted upon. This is where constituents come in.

LDANJ (now LDA) and other patient advocacy groups were urging members to contact their legislators and ask them to “sign on as cosponsors.” The more cosponsors a bill has, the more likely it is to progress up the hierarchy. There are a total of 300 congresspeople in the US. In 1999, the Lyme bills gained a total of 56 cosponsors in the House and six in the Senate. Bills with over 100 cosponsors are much more likely to be voted out of their subcommittees and rise up to the next level; some are passed with much less. Obviously our bill had not risen to the requisite level of urgency.

If you look at the congressional record on the Thomas website, you can see how the year progressed. In the end the bills got stuck in their respective subcommittees. All our work went down the drain when the session ended.

But not quite. Legislators who had signed on as cosponsors were more or less slam dunks for the next session, if the bills were introduced again, unless they were no longer in office. Elections happened in 2000, at the end of the 106th Congress. We could build on work we had already done and get a head start, but there would be some new faces. We could expect that those who had signed on before would sign on again, especially if the bill language remained constant, but people would still have to contact legislators. At least we were not starting from ground zero.

The 1999 bills had the two-year advantage, but this was not enough. We knew we would have to work harder and try to bring more people into the effort. We were gaining experience as advocates. We had strong bill authors. We didn’t know it yet, but trouble was brewing. 2001 would bring surprises, and they were not pleasant ones.

Next time: Storm Clouds Gather

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.

To read the complete article in the Lyme Times #26, click here.