Patient Coalitions

Advocacy is essential to the protection and promotion of patient care, and coalitions are essential to advocacy. Most legislators and the public have never heard of neuropathy let alone know the obstacles many neuropathy patients face in obtaining appropriate care and treatment. Therefore, neuropathy patients must continue to work actively to educate about who they are. But neuropathy patients advocating on their own can sometimes be seen as self-serving. However, when they join forces with other patient and provider groups they are viewed in a more positive light.

Major legislation is enacted most often through the combined efforts of a number of groups working in coalitions, rather than through the efforts of a single organization. With rare exceptions, only a coalition can produce contacts varied and influential enough to achieve success on a major policy issue. Coalitions focus and coordinate the resources of many groups that have a common interest. Coalition efforts may take several months or may continue for years, depending on the significance of the change being sought. While coalitions have the potential to garner tremendous legislative strength, they are always subject to the danger that some members may become dissatisfied with the direction being taken and attempt to arrange a legislative compromise not supported by the majority. Despite that inherent weakness, the risk is worth taking to gain the strength that comes from a broad base. One must realize that with the use of a coalition, compromise is the key word and, therefore, you may not always find support on all the positions it has taken.

Using Coalitions

Just as there is strength in numbers, there can be added strength in joining forces with other organizations to present a united front on a particular issue. Coalition building is a tricky business, however. No one likes to give up control or lose his or her identity. But coalitions work. They are a good way to project political strength, amass financial resources that exceed the component’s budget, and share the burden of staff and volunteer work.

Coalitions are not entered into lightly, however, because they themselves entail significant effort to assemble, nurture, and maintain over a long period of time under stressful conditions. These are a few of the things to think about when contemplating coalitions:

• The legislative process usually involves a lot of negotiation, and the first negotiations may be with your coalition partners. It is pretty rare that coalitions are made up of groups that have exactly the same interests and expectations. Be prepared for some give and take and compromise about the coalition’s goals and strategies.
• Coalitions work best when the members know exactly what is expected of them. Sometimes it is helpful to have a letter of agreement spelling out who does what and how much each group is contributing in terms of time and money. This is especially true when there is some imbalance in the size, strength, and wealth of the participating organizations.
• In some cases, a coalition may need to establish an identity, complete with a name, letterhead, and all the trappings of a formal entity. Communications to legislators and the media would always list the members of the coalition but would come from the coalition itself.

Organizing a Coalition

First it must be determined whether there is interest among other groups in joining a coalition to work on a legislative issue. Describe the problem, as you see it, in a memorandum and distribute it to other organizations seeking their input and asking them to state their position. Request a meeting among all those groups who express interest in your position and form an agreement on the specific goals of the coalition.

Every coalition must have one organization that serves as a clearinghouse. That organization attends to all the important mechanical details that go into the effective running of any meeting. The clearinghouse organization also takes responsibility for receiving information for the coalition and passing that information on to coalition members.

The strength of any coalition rests with its members. The coalition leaders must recognize that their principal role is to serve the members by working hard at the unexciting but critically important details required for effective coordination with the clearinghouse organization.

Working with a Coalition

It is very important to get the message across early that the success or failure of the coalition depends on the action of all its members. Get members involved immediately. Give them specific tasks and hold them accountable by asking them to report regularly at coalition meetings. It is essential that at least some members of the coalition view the coalition's issue as the top priority for their own organization. Otherwise, it is impossible to generate the steam needed for a successful effort on a major advocacy initiative.

It is especially important to provide coalition members with accurate, timely, brief and clear information on which to take action because, in many instances, the goals of the coalition may differ somewhat from an organization's individual, long-range agenda. Coalition members must be consistent in their presentations to legislators. Their message must be focused.

If publicized appropriately, a coalition's advocacy success can be helpful in attracting even more members and funding. Coalition members should always be given credit for patient access victories. The more coalition members feel that they have played an important role in the effort, the more they will want to stay involved and participate in new efforts that the coalition wants to make. Once a specific effort has concluded, attempt to keep the coalition alive for future patient care/access battles.