UCHAPS Legislative Guide
The Urban Coalition for HIV/AIDS Prevention Services (UCHAPS), along with its membership of researchers, public health officials, community-based organizations, advocates for health equity, and people living with HIV/AIDS (PLWHA), recognize that we have the tools at our disposal to end HIV. Thanks to advancements in research such as PrEP and treatment as prevention, as well as historic policy developments such as the National HIV/AIDS Strategy, the first blueprint focused on ending HIV domestically, we are closer than ever to putting an end to the epidemic and improving health outcomes for marginalized communities most impacted by HIV and other health disparities.
Despite these and other important advancements in science and public policy, UCHAPS also recognizes major ongoing public policy challenges affecting housing, HIV criminalization, drug pricing, access to affordable healthcare, employment opportunities, economic upward mobility for PLWHA, and other challenges rooted in stigma, discrimination, structural racism, and other forms of oppression stand in the way of progress on HIV.
Furthermore, in order for the progressive HIV policy and scientific advancements made up until this point to achieve their intended impact, particularly within Black, Brown, Queer, trans, and other marginalized communities, these advancements must be anchored in a public policy environment and a collective political will power centered on ending health disparities like HIV by reaching across the political spectrum through legislative advocacy.
It is critical that those working towards an end to HIV have an understanding of the importance of advocacy, particularly legislative advocacy, as a tool in the fight against HIV. Similar to biomedical interventions, HIV advocacy within legislative environments presents us with an opportunity to advance the blueprints, plans, strategies, and goals that will lead to a reimagined future where healthy and equitable communities across the country are a reality.
As seen during the early days of the epidemic, significant investments in time and resources towards advocacy, specifically legislative advocacy rooted in conveying the stories, experiences, and perspectives of those directly impacted by the epidemic, to elected officials can make a significant and positive impact. Beyond ending HIV, the larger goal of achieving greater health equity can be accomplished when public health policy is rooted in these stories, experiences, and perspectives. Legislative advocacy is an effective method to deliver these impactful messages to elected and appointed officials, as well as other decision makers.
UCHAPS hopes that by providing its members and the larger community of HIV advocates with this guide, we can help advocates to engage in strong, targeted legislative advocacy, particularly at the state and local levels, that will drive the policy and political change necessary to end HIV.
SECTION 1: Understanding the Power of Legislative Advocacy
According to the Missouri Foundation for Health, advocacy is defined as any action that speaks in favor of, recommends or argues for a cause, or supports, defends, or pleads on behalf of others. Legislative advocacy is doing this work directly with legislators and other elected officials. This can be one of the most effective forms of advocacy because it utilizes the influence of those holding public office to create or change laws that directly affect communities.
Legislative advocacy has advanced a variety of public policy reforms that have both positively and negatively affected people with HIV and their communities. Here are a few examples of HIV-related legislative advocacy:
In August 1999, four months after the death of Ryan Wayne White, an Indiana teenager who became a symbol of the horrors of HIV-related stigma and discrimination, Congress enacted the Ryan White Comprehensive AIDS Resources Emergency Act. This action by Congress followed years of collective legislative advocacy by HIV advocates who educated members of Congress about the realities about low income, uninsured, and underinsured about people living with HIV/AIDS. Ryan White now stands as the largest federally funded program for people living with HIV/AIDS.
The National HIV/AIDS Strategy (NHAS) developed under the Obama Administration remains the only federal blueprint focused on ending the HIV epidemic. The NHAS and its 2020 update is a collaborative product of White House staffers, federal agencies employees, and HIV advocates. The development of the NHAS and the push by advocates to get the White House to spearhead the creation of the strategy served as a model to advocates working with state and local elected officials to develop state or city strategies to end the epidemic inspired by the creation of NHAS. Examples of these strategies can be found in different stages of development and completion in New York State, San Francisco, Houston, and Atlanta/Fulton County, Georgia.
In 2014, the Washington State Legislature included funding for a statewide PrEP Drug Assistance program in their state budget. Several states followed suit including Massachusetts, New York, Florida, and Atlanta, GA.
In October 2017, California Governor Jerry Brown signed into law groundbreaking legislation that would modernize and reform the state’s outdated and unfair HIV criminalization statues. The Bill signed by the Governor updates California’s criminal law to approach HIV transmission in the same way as the transmission as other communicable diseases. State Senator Scott Weiner and Assembly member Todd Gloria introduced the bill, which garnered the support of numerous LGBTQ, public health, and HIV organizations, including the ACLU of California, Black AIDS Institute, Lambda Legal, and the Positive Women’s Network. These organizations along with many activists work in partnership to educate, inform, and lobby members of the California State Senate and Assembly to move the state away from archaic HIV laws birthed out of fear in 1980s and into 21st century public policy rooted in science.
There are many forms of legislative advocacy that can fit a variety of skill sets, interests, time constraints, and budgets. Listed below are a few of the main examples of activities related to legislative advocacy, however there are other activities such as hackathons,boycotts, voting, or joining a board are activities that can also influence and inform policy and advocacy efforts within legislative institutions.
Summary: Sending a clear and concise letter or email is a commonly used method of communicating with elected officials.
Level of Difficulty: Easy on the individual level, however spearheading a letter writing or email campaign aimed at getting a large number of people in contact with their elected officials often requires more effort.
Cost: Little to no cost. There can be a small cost associated with using mass email programs.
Requires little effort
Creates documented history
Able to provide more detail and context
Can be done from anywhere
Does not aid in building relationships
Can end up in spam or not read
Tips for Success:
Be brief and aim to keep the letter to one page at most.
Address why you are writing the letter in the first paragraph.
Use facts to back up your opinion.
Summary: An in-person meeting with a group of advocates can have a long-lasting impression on an elected official. When planning to meet with officials or their staff, it’s important to devise a strategy and clear demands that can be tied to personal stories along with facts and potential solutions that inspire elected officials to act.
Level of Difficulty: Moderate. Elected officials often meet with groups of constituents and coalitions of advocates, however this is in addition to their regularly scheduled meetings and engagements so their time is typically limited. This can make scheduling in person meetings difficult and each elected official and their staff will prioritize meeting requests differently.
Cost: Aside from transportation, little to no cost
Builds relationships and personal connections, allowing for deeper engagement
Message can be better relayed
More information can be shared
Allows for greater understanding of the priorities of the elected officials
Can be difficult to schedule
Limited meeting time
Tips for Success:
When scheduling the meeting, try to ensure that at least one or more of the meeting participants are residents of the elected official district. This greatly increases your chances of securing the meeting.
Bring a short fact sheet or handout that reiterates points made in the meeting and provides additional statics and facts.
Volunteer yourself as a source of expertise on issues related to HIV.
Develop a plan for the role that each participant will play during the meeting to ensure that all of your intended messages are conveyed.
Remember you are the subject matter expert
Summary: These are events organized with the intention of bringing a collective mass of activists and advocates to legislative bodies, like Congress or the City Council to educate and inform politicians about a particular issue. These events also create spaces for advocates to demand support or disapproval on particular pieces of legislation and simultaneously building visibility.
Level of Difficulty: Considerable. These events have lots of moving parts and can be a logistical challenge. Advocacy Days are best organized in partnership with other like-minded organizations and with elected officials who have taken an interest in the issue of HIV.
Cost: Depending on the number of advocates, the goals and length of the advocacy day, and the distance advocates have to travel for the event, the cost for an advocacy day can vary widely.
Provides an opportunity for advocates to see government in action
Creates an audience with a large group of elected officials at once
Creates an environment of accountability for elected officials from their constituents.
Requires establishing a coalition
Can be intimidating for new advocates
Limited meeting time with elected officials
Tips for Success:
Establish a planning committee and actively recruit people who have relationships at the legislative institutions where you are planning lobbying/advocacy days
Each elected official engaged by an advocate during the advocacy day should receive a fact sheet or some other token to keep the issue of HIV on their mind.
Summary: These events are great at providing elected officials with a deeper level of understanding of the issues related to HIV and other health disparities. If planned comprehensively, these briefings can provide an opportunity for government agency’s leaders, community based organizations, activist and people living with HIV the opportunity to share their work, ideas, thoughts, and perspectives on the current state of HIV treatment and prevention methods and a future where ending HIV is achievable.
Level of Difficulty: High. Similar to organizing face to face meetings and advocacy days, legislative briefings can be difficult to organize due to the time constraints of elected officials and the logistics of having to get a considerable amount of HIV experts and community members to agree to participate in this event at the same date and time. It’s best to plan these events well in advance of their intended date and work directly with individual elected officials or legislative committees and caucuses.
Cost: Little to no cost. If organized in conjunction with a group of elected officials the cost of space is oftentimes free at state capitols and city halls around the country. However, as an additional incentive to get people to participate you may want to consider catering breakfast or lunch.
Allows for a deep level of engagement on complex public policy issues
Provides an opportunity for people to share information about their work and experiences
Encourages politicians to ask questions and gain greater understanding
Provides an official on-the-record dialogue that is documented and archived by the government
Big time commitment for planning and logistics
Requires a commitment for an elected official’s office to help plan
Tips For Success: similar to planning lobby days or advocacy events, you will want to work in coalition with other organizations and those who have relationships with legislators.
Summary: Rallies, Protests, and demonstrations are activities that peacefully interrupt public space as means of getting the attention of the general public, the media, and decision makers like elected officials to pay attention to a particular issue and take action. These activities are used by many HIV advocates in the early days of the epidemic, with several notable protest being led by ACT-UP directed towards Wall Street, Congress, the Food and Drug Administration, and the National Institute of Health to speed up the progress on HIV research and drug pricing.
Level of Difficulty: Difficult. Organizing rallies and demonstrations takes a large amount of communication in order to obtain the required permits, coordinate with networks of like minded organizations, and recruit volunteers. Advance planning is necessary for a successful event.
Cost: Little to no cost. Depending on the location of the activity there may be some permitting fees applied. Be sure to have plenty of water and providing breakfast or lunch maybe another way to get more participation.
Creates visibility for your cause
Generates interest from outside groups and people not normally associated with your cause
Provides a platform to motivate people to action and creates excitement around your cause or issue
Message can get diluted
Managing a large crowd
Not the best platform to hash out specific policy proposals and reforms
Tips for Success: Similar to planning lobby days or advocacy events, you will want to work in coalition with other organizationsto pull together a rally, protest, or demonstration to ensure maximum participation. These activities work best when paired with lobby/advocacy days as a dual strategy that conveys policy recommendations to legislators and other decision makers within traditional legislative settings while also using traditional grassroots advocacy to convey those messages same to the larger public and the media through interrupting public spaces.
SECTION 2: Do’s and Don’ts of Legislative Advocacy/ Lobbying
Despite this being a powerful form of advocacy, many people and institutions are uncomfortable engaging in legislative advocacy due to uncertainty around the legal restrictions on engaging in advocacy and lobbying.
It is important to know that lobbying is only one form of advocacy. Not all advocacy is lobbying, but all lobbying is advocacy. While many use the words interchangeably, there is a difference between advocacy and lobbying.
For example, a community-based HIV organization may engage in advocacy directly with its clients or members of the community they are located in around safer sex practices like condom use or even general advocacy with elected officials around the importance of making condoms more available in schools. Lobbying is specifically an advocacy effort that seeks to influence legislation. An example of this would be another community-based organization who goes to the Capitol or speaks to the media in support of a specific bill being introduced by an elected official to put more condoms in school or to build more PrEP clinics in the state. By understanding the difference between lobbying and advocacy can help nonprofits and other community-based organization better understand the laws that limit, but do not restrict, their ability to lobby or engage in other advocacy activities.
One of the biggest misconceptions is that nonprofits and community-based organizations are not allowed to lobby. That simply is not true; however, this unfortunate misunderstanding has prevented many advocates and nonprofits from demanding the policy reforms and funding from elected officials that is needed to end the HIV epidemic. Barring an individual or nonprofit from lobbying is unconstitutional and prevents freedom of speech but, there are some limitations and regulations placed on nonprofits seeking to lobby. Here are some things you should consider:
1934 - 26 U.S.C. § 501(c)(3) sets a limit (no “substantial part”) rather than imposing an outright ban, Congress recognized the rights of nonprofits to do some lobbying.
1974 26 U.S.C. § 501(h) allows nonprofits the option to elect to use the bright-line “expenditure” test rather than the vague “no substantial part of activities” test; and
26 U.S.C. § 4911, for those nonprofits electing to use the expenditure test, sets generous dollar limits on the amounts those nonprofits can spend on lobbying (a sliding scale that starts with 20% of the nonprofit’s first $500,000 in expenditures), provides clear definitions, and exempts certain activities from consideration as “lobbying.”
In general, no organization may qualify for section 501(c)(3) status if a substantial part of its activities is attempting to influence legislation/lobby. A 501(c)(3) may engage in some lobbying, but too much risks loss of tax-exempt status. Legislation includes action by Congress, any state legislature, any local council, or similar governing body, with respect to acts, bills, resolutions, or similar items (such as legislative confirmation of appointive office), or by the public in referendum, ballot initiative, constitutional amendment, or similar procedure. It does not include actions by executive, judicial, or administrative bodies.
An organization will be regarded as attempting to influence legislation if it contacts, or urges the public to contact, members or employees of a legislative body for the purpose of proposing, supporting, or opposing legislation, or if the organization advocates the adoption or rejection of legislation.
Organizations may, however, involve themselves in issues of public policy without the activity being considered as lobbying. For example, organizations may conduct educational meetings, prepare and distribute educational materials, or otherwise consider public policy issues in an educational manner without jeopardizing their tax -exempt status.
SECTION 3: Building an Advocacy Campaign
When launching an advocacy effort to push for policy or legislative reforms, it is wise for individual and organization to look at their efforts as a campaign. The ultimate goal of any campaign is to win and the best way to win is to:
Set a winnable and achievable goal, create a clear message, build a coalition, set a timeline and use multiple advocacy activities.
1. Setting a Goal
While your overarching vision as an advocate or organization could be the end of the HIV epidemic, the goals for any advocacy efforts should be both immediate and realistic, setting the stage to take smaller steps toward accomplishing a larger vision. For example, while a goal of most HIV advocates is to end the epidemic, a more immediate goal could be to end inaccessibility to PrEP and PEP in your city. Again, it is important to create smaller steps towards a larger goal. Successful advocates look at their advocacy efforts as a marathon rather than a sprint.
When evaluating the goals of your advocacy campaign and lobbying efforts, think SMART:
Specific - Clearly define and identify
Measurable - Be able to measure
Actionable - Able to be done or acted on; having practical value
Realistic - Having or showing a sensible and practical idea of what can be achieved or expected
Time-Bound - Attached to a certain moment or era in time
2. Creating a Clear Message
One of the most important aspects of any successful lobbying efforts and/or campaign is a clear, well thought out, and intentional message that conveys the specifics of your policy or legislative demands. If not, you will run the risk of the public and the targets of your efforts being unclear about your demands.
Any message should take into account the audience you want to engage, educate, influence or move to action on any particular issue. It should be a message develop by people directly impacted by the issue and a message that supporters, key influencers, and targets, can easily understand. That means using language that is accessible to the decision makers, and the communities impacted by the decision. Stay away from using terms that are typically unknown to the general public and as a general rule, acronyms, and professional terminology unknown to those who do not work in the field of HIV prevention and treatment.
Finally, your message should be exciting! An exciting message build support and inspire people to think critically about your issue, but most importantly it should ignite a fire that gets the public and legislators alike to act. Also, remember that an inspiring message means nothing if it is not easily shared. When evaluating your advocacy message, you should be asking yourself whether your message is:
Connects easily with people
Communicate your values
Provides a clear target
Provides a clear demand
Provides clear instructions on how people can act
3. Building a Coalition
Whether you are building a team of individual advocates or a coalition of organizations synergizing around a common advocacy goal, it is imperative that you develop a network of people and/or organizations with a variety of skill sets, strengths, and relationships that can advance your goals. Building a network will not only help with sharing the workload, but it will also ensure that the core components of your advocacy campaign, including your message, is not created in a vacuum.
Advocacy campaigns and lobbying efforts developed in the absence of an inclusive and diverse coalition of organizations and individuals run the risk of not appealing to the larger public and different stakeholders and decision makers. Remember, despite the passion and knowledge you may have about your particular advocacy or legislative issue, many of the individuals necessary for making change may currently be largely unaware of your issue. As your coalition builds out the advocacy campaign, encourage your group to uplift and support the diverse perspectives of all those involved in the effort to win.
Here are a few of the essential technical skill sets necessary for a successful advocacy campaign:
Community Organizing and Mobilization
Traditional and Social Media
4. Setting a Timeline
Having a specific timeline will greatly aid your advocacy efforts, but be sure not to make your timeline so specific that it restricts your campaign’s ability to grow, evolve, and adapt to rapidly changing events or news in your community that may impact your advocacy issue. Some of the most successful campaigns are able to capitalize on a critical moment in any given news cycle. For example, when the current administration disbanded the President’s Advisory Council on HIV/AIDS, many HIV advocates were able to use the increased media attention around this action to amplify their demands around HIV funding and programs at the state and local level to combat the negative effects of this decision.
While allowing your campaign a flexible timeline, be sure to set benchmarks and map out dates for when your campaign will aim to reach certain checkpoints as you move towards accomplishing the larger goal. Setting time oriented benchmarks allows you to make concrete assessments of your campaign’s progress. If you find that you are not able to reach key benchmarks, convene with members of your coalition to evaluate and provide feedback around how to move forward.
Here are a few questions you and your coalition should be asking when reviewing and agreeing to any particular timeline for your advocacy campaign:
Is it realistic?
Does it allow time for unexpected events?
Can the coalition members commit?
Is this the right time or season for our issue?
How does breaking news or current events impact my timeline?
Does this timeline make room for fundraising?
5. Advocacy Activities
Once the coalition has a clear sense of the message and the timeline that your campaign will adhere to, the process of implementation can begin. Your campaign has a variety of options as it pertains to activities and strategies to communicate the core message of the campaign to decision makers, influencers, and the public. While many advocacy activities can be done for free, reaching the intended outcome of your campaign may require funding to implement any large scale acitivities such as email campaigns or in person advocacy days. Work with your team to establish a budget and fundraising plan to support these activities.
Potential communication strategies for an advocacy campaign:
Social Media Campaigns
Earned Media (TV, Print, Radio, Blogs)
Paid Media Commercials
Physical or Online Petitions
Rallies, Demonstrations, Direct Action
SECTION 5: TheLegislative Process
While the legislative process may vary from state to state, the process is largely the same in most situations. This is particularly true at the federal level where both houses of Congress follow the same legislative process, with the exception of a few procedural rules that can vary between the House and the Senate. The federal legislative process serves as the model for the legislative processes found at the state level, particularly if the state also has a bicameral legislative structure, i.e. having two legislative bodies such as a State House/Assembly and State Senate.
Source: Michigan State University
In some states and in most local governments, a unicameral legislative structure, having one legislative body such as the city council, school boards, or county commission, can be found. As you can imagine, having one less legislative body to work with can make advocacy and lobbying much easier. Many advocates looking to make an impact, but many will just be starting out with their advocacy should look at possibly starting at the local level.
Additionally, many of the most pressing issues impacting the HIV epidemic, such as comprehensive sex education in public schools or housing for people living with HIV, are challenges that need to be addressed at the state and local level. As a general rule, the parts of the government closest to its citizens typically have the most impact in people’s lives and can be the easiest government to influence due to accessibility.
Whether it is Congress or the local city council, during the committee process the public is typically invited to share their thought and perspectives in an open forum with their government leaders. Be sure to ask the staff of the elected officials in your area what the rules and processes are for providing on the record public comment or testimony.
When engaging with elected officials who serve in these various legislative bodies, here are few tips to keep in mind:
Research your elected officials. The first step in researching an elected official is knowing what area or district they represent. Use openstate.org or votesmart.org to help you determine who your elected officials are and view their voting records. Facebook,also offers a feature to connectindividual users and fan pages with elected government officials directly via Facebook post through tagging. When composing a new post, there is now an option that allows users to search for and add their representative’s information to the post.
Understand the climate of the legislative environment. Learning the climate of the legislative environment you are engaging in advocacy or lobbying activities can also be beneficial to a success advocacy campaign. Find out if this a good year to push your issue down at the state capitol or if it is better to focus your attention on building support on a policy issue among the general public rather than with elected officials. See what the other hot button issues are being talked about amongst the elected officials and see if you can blink your HIV advocacy to those conversations.
When meeting with elected officials remember to make introductions and if you are in a group, be clear who is their constituent, as they will be most responsive to them. Give brief and clear statements that identify the problem and your solution. Be sure to think through your talking points individually or as a group before speaking with any elected officials.
Find common ground with your selected officials. When researching, find out what you have in common with the elected officials you are targeting. Learn their backgrounds so you can have a better understanding of their policy, advocacy, and community interests. Find out what committees they sit on and caucuses they belong to. Learn who can influence them and who they can influence. This may be beneficial in gaining a successful outcome to your advocacy campaign. Provide personal stories, but support your conversation with facts. Personalize your comments to ensure that the elected officials understand how this issue impacts their local residents. Be sure to ask them for their support and be respectful and kind if you do not get the support you are looking for. If you do not receive the support you are looking take a step back, and confer with your coalition or team to determine if it makes sense to escalate your tactics towards non-supportive elected officials or simply move on to find other elected officials who will support you. It is always the goal to get elected officials to become champions of your advocacy campaign.