Our representative system of government places a special responsibility on each of us to make our voices heard in Washington, DC. In fact, no more important source of information is available to members of Congress than the people who live and work in their state or district. As their constituents, patients living with a rare disease, along with their families, represent more than an abstract theme or statistic. We offer personal experiences that make us uniquely qualified to talk about the issues that matter most to our community—issues such as access to affordable healthcare coverage, patient rights and protections, improved public health services, increased rare disease research funding, and more orphan drug development.
Lobbying = Advocacy
Interestingly, quite a few leaders of patient organizations have a misperception that nonprofits are not allowed to lobby. To the contrary, most nonprofit patient organizations should consider it their duty to lobby because there is no better way to influence major changes that can help their organization to achieve its mission.
Lobbying is nothing more than educating the people who are responsible for making government policy, such as legislators. In the nonprofit sector, many people tend to avoid the word “lobbying”, and instead refer to “educating policymakers” or “influencing legislation” or more simply, “advocacy.”
The federal government defines lobbying in two categories: contacting legislators or their staff is considered “direct lobbying,” and urging the public to take action—such as, telling people to write to their Senator or Representative—is considered “grassroots lobbying.”
Contacting government agencies and legislators about laws and regulations that are already in place is not considered to be lobbying. Educating the members of your organization about pending legislation without a specific call to action—and therefore, not advising them to support or oppose the legislation—is not lobbying. Answering an inquiry from a legislator, or testifying at the invitation of a government body, is not lobbying. However, if you request the opportunity to testify to a government body, that is lobbying.
Financial Restrictions on Lobbying
The Internal Revenue Service (IRS) regulates nonprofit lobbying in terms of how much money an organization spends on lobbying efforts each year. Specifically, nonprofit organizations are instructed to choose one of two standards that the IRS uses to measure lobbying activities:
- Insubstantial Part Test: Federal law requires that “no substantial part of a charity’s activities... be carrying on propaganda or otherwise attempting to influence legislation.” Unfortunately, this section of the IRS rules does not define “substantial,” so many nonprofits limited their lobbying activities until 1976 when Congress created a different expenditure test.
- Section 501(h) Test: Nonprofits can elect to adopt this test, which sets specific dollar limits on how much money they can spend annually on lobbying: 20 percent of the first $500,000 of exempt purpose expenditures in a year; plus 15 percent of the next $500,000; plus 5 percent of the remaining exempt purpose expenditures; up to a total cap of $1 million.
Non-Financial Restrictions on Lobbying
In addition to the financial limitations on nonprofit lobbying, 501(c)(3) nonprofit organizations must never endorse or oppose political candidates. Additionally, a charity can only lobby on issues that are directly related to its mission.
This means that if a nonprofit’s mission is dedicated to the alleviation and cure of a disease, it can lobby on health-related issues, but not on policy matters that are unrelated to health or disabilities. For example, such an organization cannot lobby for getting the streets in a community paved, but can lobby for curb-cuts that would make streets more accessible to wheelchairs. It cannot lobby for salary increases for teachers in a local school district, but it can lobby for better special education programs for students with disabilities.
On the national level, such an organization cannot lobby for better regulation of the mortgage or banking industry, but it can lobby for increased research at the National Institutes of Health (NIH), or a larger budget for the Food and Drug Administration (FDA), or improvement of Social Security Disability Insurance, Medicare, Medicaid, etc. The issues that a nonprofit organization can lobby for or against must directly affect the people the organization represents in relation to the organization’s mission.
The prohibition against supporting or opposing political candidates can be sensitive for nonprofits. For example, if a patient group publishes an article in its newsletter that mentions a candidate who is running for office, it must avoid wording that might suggest the organization supports or opposes that candidate. Additionally, if a member of the board of directors or staff wishes to work on the campaign of a candidate running for office, he or she must clearly separate their professional affiliation from their private life. Many professionals in the nonprofit field avoid any situation that might lead to an impression that the organization—rather than the individual—supports or opposes a candidate for political office.
Being an Effective Advocate
Clearly, lobbying can be grueling work. To paraphrase Mark Twain, “People who respect the law and love sausage should watch neither being made.”
To be an effective lobbyist, it is important for patient advocates to understand the structure of the government, including which laws are under the jurisdiction of state governments and which laws are under the control of the federal government. Legislators are often overwhelmed by the broad spectrum of policy issues they are supposed to know, and they often welcome lobbyists on all sides of an issue who can educate them. But a lobbyist will look foolish asking a state legislator to change a provision of Medicare when Medicare is a federal law, not a state law.
Patient advocates must know the issue thoroughly, as well as who supports and opposes it, and why. They should be able to easily and briefly explain the issue in understandable terms, not exaggerate, and never promise something they cannot deliver. When they don’t know an answer to a question, they should admit it and promise to get the answer as soon as possible. If they maintain their integrity, they will be trusted, especially because legislators know that people representing nonprofit organizations will not personally be enriched from the outcome—as opposed to corporate lobbyists, who far outnumber nonprofit lobbyists.
As a policy issue moves through the legislative process, compromises often have to be made. At this point, patient advocates must decide whether some progress on an issue is better than none at all. This is why it is often best to work within coalitions that represent a wider, similarly impacted audience, beyond only your constituents. It is wise to consult a broad array of people who care about your issue and let them inform the decision your organization will make.
Making a Strong Case
Before ever visiting a legislator, it will be helpful to learn about their home district and perhaps calculate how many people in that district may have the disease or care about a particular issue. For example, how many constituents are uninsured or how many are disabled. Leave behind a fact sheet that is brief and to the point, such as a one-page summary with bullet-point facts to which the legislator can later reference. Finally, always thank the legislator or his/her staffer, both in person and in writing, for taking the time to meet with you and listen to your concerns.
Keep in mind that for patient advocates to be highly effective requires more than just a willingness to get involved. It requires a good understanding of how the policy-making process works and knowing about the key players. Most importantly, it requires that you know when your contact with lawmakers can have the greatest impact on the decision-making process. No matter how compelling your message, it will count for little if decisions have already been made.
NORD has learned that the more effectively nonprofit patient organizations communicate with their elected officials, the more favorable our representative system of government will be toward addressing the many unmet needs of the rare disease community.