Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. LDA president Pat Smith and CALDA executive director Lorraine Johnson provide you with a framework to think about legislative issues and discuss some of the pitfalls you should avoid. First of a three-part article that was published in the Spring 2005 issue of the Lyme Times.

Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. This article will provide you with a framework to think about legislative issues and will discuss some of the pitfalls you should avoid.

Educate Before You Legislate

Before you begin the process, you should ask for hearings on Lyme disease in your state. You can (and should) also have hearings in connection with an introduced bill, but often more general hearings are necessary first to make lawmakers understand the need for legislation. These hearings are valuable tools for educating legislators about Lyme disease and the problems facing patients. If done in an organized fashion, they can have a positive influence on the legislative and policy-making process.

Have facts prepared to support your case and line up reliable, intelligent witnesses to testify. Be selective. Avoid people who might turn legislators against the cause by being unduly strident or antagonistic. Include a mix of patients, physicians, and possibly other experts. If you have access to favorable testimony from vector control districts or department of health officials, this should be included.

Witnesses should have prepared testimony that can be handed in to become part of the official record. It is important to coordinate witness testimony so that all critcal points are covered without unnecessary duplication. To date, significant hearings have been held in New York, Rhode Island, Texas, Michigan, Connecticut, and California. Some of these hearings were at the legislatures; others were at advisory committees, the attorney general’s office and the state department of health.

Beyond legislative hearings, patients can meet individually with their representatives at their local offices or participate in state lobby days. To prepare for these activities, patients should educate themselves about Lyme disease and be prepared to be factual, not emotional. Lobby days are a great way to bring focus on an issue and rally the troops. Advocates can arrange a day to meet at the capital and visit legislative offices in small groups. Patients can also arrange a meeting with a legislator they or a friend personally know, or one who has Lyme disease in his/her family, or who has been sympathetic to health issues. These one-on-one meetings add a personal touch that helps turn individual legislators to your cause.

Strength in Numbers and Coalitions

Maximize your numbers by coordinating with other Lyme groups, including national ones and other groups outside of Lyme with a similar agenda. In New York, for example, the Lyme community was able to work with the Foundation for the Advancement of Innovative Medicine (FAIM). Its agenda coincided with that of Lyme patients: namely, the need to reform the Office of Professional Medical Conduct (OPMC). LDA has worked with many state groups and individuals and helped provide an orderly process for grassroots support in their states.

LDA has also been invited by many state legislators to educate and to provide input into legislation. If you are a 501(c)(3) organization, check with your accountant or attorney to make sure that you don’t exceed your limit for lobbying.

Initial Considerations for Legislation

Legislation is complicated and should never be developed in a vacuum. No one has all the answers because the variables are many, and they change constantly. Legislators often are election- rather than issue-oriented. That may be an advantage if you can muster up the numbers to persuade them, or it may be a disadvantage if your numbers are small.

Be proactive. Take time to understand the politics in your state before you begin. Selecting a legislator to sponsor your bill may determine whether your bill will be successful or not. Who is introducing your bill? Do they really support it or are they giving you “lip service” on the issue and introducing it knowing it will never move? Do they have the support of their party? Do they need bipartisan (2-party) support, and do they have it? Is the support only in one house or both houses of the legislature?

Generally speaking, it is easier to get a bill introduced and passed in the house/assembly than in the senate. Decide what points you want in the bill. Look to other states that have successfully passed legislation, since legislators do usually not like to be “first.” If you borrow a bill from another state, make sure that you check how its provisions apply in your state. It may be different. You may be asking for doctors to be notified of a complaint in 30 days when you state regulations already say 10 days. If your bill is to be part of or replace chapter 10, find out what chapter10 is and how your bill fits there. In California a friendly legislative counsel volunteered to find out which parts of the code needed to be referenced in a bill and to write up the appropriate legal language.

Advocates in different states have used a number of legislative approaches, including those listed below:

• the reform of medical board practices to provide increased levels of due process to physicians;
• doctor protection against actions by medicalboards;
• mandatory insurance coverage for long-term Lyme disease treatment;
• informed consent for those who are using treatments considered non-standard;
• Lyme in public education reforms (state-adopted Lyme curriculum, mandatory teacher in-service for educators with students with Lyme disease inNJ);
• establishment of Lyme advisory councils, commissions (to advise governors, health departments, legislators: CA, DE, NJ, MA);
• Lyme awareness resolutions; and
• support of federal Lyme research initiatives.

What is contained in your bill usually determines in which legislative committee(s) it must be heard. Check with the sponsor to determine if there is away to keep it out of a committee if you know that committee chair or a member is vehemently opposed or if the committee poses a particular problem because of budgetary constraints in your state. For example, sometimes insurance or budget committees are obstacles to success. Check out legislator credentials online for clues to position, or ask the legislator who is helping you.

Part 2: Deadly Combinations

Part 3: Bills That Hurt