Lobbying Guidelines for PKU-Related Insurance Benefits

These guidelines were prepared by PKU parent, Dan Huber of Baltimore, Maryland, based on the successful experience of parents and professionals involved in advocating for state legislation. Maryland passed model legislation in 1995, to be benefit of all families of children with PKU and other inherited metabolic diseases in the state.

I. AWARENESS

Lobbying state legislators for PKU related insurance benefits should be approached as an awareness campaign. If properly presented, very few lawmakers will dispute the legitimacy and necessity of both the required formulas and low protein food products. It is important to keep in mind, however, that through every step of the legislative process, professional lobbyists will be working diligently both behind the scenes and in pubic forums to counteract your efforts. Remember, nothing personal, but that is their job. So, in order to launch a successful legislative effort you must maintain awareness of your competition and strive to stay one step ahead of them by thoroughly and relentlessly taking every opportunity available to educate every state legislator that you can.

II. WHERE TO START

First, you must organize. This can be achieved through PKU family organizations, your state health department, or by simply pulling a few interested families together. As you will see later, organizing will be paramount in launching a successful campaign. Additionally, the information that you will gain en masse will be critical in keeping one up on the insurance lobbyists. They generally are not anticipating a well organized effort. Surprise them.

Obtain from your state a Legislative Reference Guide or General Assembly Roster. This guide is generally free and available from your state's Office of Legislative Reference. It contains a complete membership listing along with biographies and committees specific to each member. This information will be invaluable when determining which legislators are key targets for solicitation of support e.g. chairperson and members of committees and subcommittees responsible for health care legislation (Appendix 1).

Obtain a Legislative District Map. This map outlines the specific district structure of your state. This map along with the reference guide will enable you to identify which families are represented by specific legislators. Use this information to match as many families as possible with committee members. It is very important to recognize that typically the general membership of both houses of your state legislature, the House and Senate, will cast their vote on the recommendation of their respective committees since the committees have already had benefit of hearing and evaluating the public testimony. More about this later.

III. FINDING SPONSORS FOR THE BILL

Much can be said about finding an appropriate sponsor and cosponsors to introduce your proposed legislation to the general assembly. The ideal situation would be to secure the sponsorship of a committed, hard working representative who is not in the habit of endorsing every piece of health care legislation that is introduced. They tend to be taken more seriously by their fellow lawmakers. However, on the other hand, it can also be argued that any legislator whom is willing to sponsor your bill is a good sponsor.

The best way to handle this situation is to start with your own local legislators. Contact them at their district office and briefly describe the problem and your concerns regarding the lack of insurance coverage. Describe PKU and the implications of living with PKU. Request and obtain a face to face meeting in their office to further discuss the issues. Prepare for the meeting by organizing a variety of low protein food products, formula, the low protein foods list and anything else you can think of to help educate your representative about the complexities and expense of living with PKU. Mark the prices of the products with magic marker on each product box to further drive home your point.

Provide them with as much backup material as possible relating to the cost issues, health issues, etc. But, most importantly, ask if they would consider sponsoring or cosponsoring a bill. They may not volunteer, so ask.

And, as other families speak with their own representatives and secure more support, put them in touch with each other. The more cosponsors a piece of solid legislation has the better your chances are for a successful outcome.

IV. EDUCATE YOURSELF

Obtain as much information as possible regarding the current issues surrounding PKU. Distribute the same information to all of the participating families so that each is providing their legislators with the same information. Never give conflicting statements or testimony. Although the information regarding these issues can sometimes be incomplete or even obscure, be sure to maintain consistency.

Develop a Fact Sheet for distribution to both the families and the state legislators. Make yourself an authority on PKU. The legislators will recognize this and rely on your information as a parent and give more weight to it than the conflicting arguments of the lobbyist.

V. THE CAMPAIGN

Your sponsor is secured and your families are now organized. Or at least somewhat organized. Now you need to concentrate on the real lobbying effort.

Prior to the committee hearings:

1. Determine which committee members represent families within their respective district and plot them on a map

2. Contact those families and ask them to write and/or call their representatives and make them aware of the bill and also urge their support (Appendix 3). You'll find that many people are unaware of who their legislators are, unless your families are more politically aware than most, so they will need all of the prompting and help they can get. But, be assured, it's going to be a difficult challenge without their help.

3. It's important when working with other families that they be requested to report back to you with the results of their efforts. This does two things. First, it allows you to keep track and monitor the temperature of the legislators regarding the bill. Secondly, if you encounter specific concerns or questions being raised by the legislators, you can attempt to address those issues within the testimony during the hearing.

4. Some legislators return to their district offices on weekends while they are in session. If you can, ask the families to attempt to meet with their representatives in their offices if at all possible. These one-on-one meetings are extremely effective. I don't know whether time allows for it, but if it does they should:
   1. Review the actual legislation.
      
   2. Take some pre-mixed formula and a variety of foods with the pricing marked on the packages.
      
   3. Give their personal history with PKU and the problems that they've encountered.

5. If you are not able to speak with them personally, be sure to give your best effort in educating their aides. Tile aides can often be very helpful and they do talk among themselves. This is exactly the kind of reaction that we hope for.

6. Don't become concerned or discouraged if they don't commit their support at this point. Most seasoned legislators find it prudent to wait for the testimony from both sides before rendering a final decision, yet you've certainly planted the seed that will make them sit up and take notice.

VI. PREPARING FOR THE HEARINGS

1. Get as many professionals and professional organizations as possible to endorse your legislation. This can be done by preferably testifying in support of the bill or at least by providing you with letters of endorsement.

2. Prepare to present as diverse and complete an argument in support of the bill as possible. Don't march a continuous line of parents up to the microphone all saying the same thing. This type of testimony is very annoying to the committee and you risk losing their attention.

3. This is the 'Big Day' and it deserves a lot of consideration and attention.

   1. Have ail 'expert parent' represent the families. If you plan on testifying last you will be able to fill in any gaps that weren't covered by other parents.

   2. Consider the possibility of having a parent with two affected children testify.

   3. Of great impact, is an adolescent (12 - 13 years old) who is well spoken, relates to the committee members what being on this diet is like, how gritty the formula is, what it's like to socialize while trying not to always feel different, etc. A child like this can grab at their heart strings like no one else.

4. Be aware of your time. You will benefit by presenting a concise, complete, and courteous case.

5. Try to anticipate your opposition's argument and address them within your testimony. This can take the steam out of their opposition and neutralize their testimony.

6. Remember the children's photos. I would strongly advise you to consider devoting some time and effort in presenting children's photos, in the most professional manner possible. Mount those photos, along with their family profiles, on black poster board and pass them around during your testimony. This tactic is very effective by putting a face on the issue. The legislators will look for children whom they or their colleagues represent. But the mere fact that maintaining the diet produces bright, active and normal children whom they can actually see will be very effective and well worth the effort.

7. Remember to attempt to secure a brief meeting with the committee chairman just prior to the committee convening, on the day of your hearing to discuss the issue personally with him/her. If you can gain the confidence and support of the committee chair person then you are doing yourself a big favor.

8. The days immediately following the hearing are crucial. With the testimony still fresh in their minds, now is the time to start an all out assault of their offices with phone calls, and letters or faxes, if time still permits.

   1. Find out when the committee will vote on your bill. They typically reserve one day per week for committee voting.

   2. Use this time before the vote to, once again, barrage them with phone calls, letters, and faxes. This is also a time when you will have the ability to begin to take the temperature of the legislators concerning your bill. But be advised to never take anything for granted.

9. Once the committee has voted favorably and forwards the bill to the full legislative branch for a vote, then the same routine needs to be started with all of the remaining representatives. You probably won't have much time before this happens however. But if each legislator receives one or two effective letters describing the issue and the legislation for which they will be casting their vote, and the letter is convincing, that may be enough.

Okay, if you get this far, congratulations, the end zone is in sight. However, now you need to start the entire process again in the remaining legislative branch. Although by this time you'll probably be helping a parent from another state with their effort.

Good luck and happy lobbying.

Any further questions can be directed to Mr. Dan Huber, author of these guidelines, at the following address or telephone number: 12 Hoban Court, Baltimore, Maryland 21236. Tel: 410-256-5991.