The Arthritis Foundation is a nonprofit organization representing 54 million Americans living with various forms of arthritis. Their main objectives include programming to help people manage their disease, as well as advocacy initiatives that both promote research for cures and help patients receive adequate health insurance coverage.
While the foundation’s headquarters is in Atlanta, almost half of their advocacy team is based across the country, grouped into Southern, Northeastern, Midwestern, and West Coast regions to monitor legislation and regulations. Their grassroots program, made up of huge numbers of volunteer advocates around the U.S., is headquartered in Washington, D.C.
Keeping Track of Multiple Teams and Actions
To stay on top of their legislative issues, manage all their conversations and interactions with lawmakers, and mobilize their grassroots to take action, the Arthritis Foundation needed a powerful solution that combined tracking tools with the ability to launch and create best-in-class advocacy campaigns.
There weren’t very many companies doing everything,” says Ben Chandhok, the Senior Director of State Legislative Affairs at the Arthritis Foundation. “A vendor might have a good CRM, or good grassroots [tools], they might do state legislative tracking really well, or their federal news was really good [but] there wasn’t a company that did everything well. Nothing talked to each other. When we switched vendors it was a pain having to start all over again.”
Merging those two arms of their issues management, the legislative tracking teams who have to stay on top of 1000s of bills and regulations, with the grassroots side, which is made up of over 140,000 contacts, gives the foundation a winning edge.
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How the Arthritis Foundation Uses FiscalNote to Pull it All Together
FiscalNote’s powerful tracking and stakeholder management tools, combined with the industry-leading VoterVoice advocacy platform, lets the Arthritis Foundation get their legislative and advocacy efforts synced.
Each fall, the legislative affairs team sets priorities - identifying what legislation passed in previous sessions, and looking at what worked and what didn’t in regards to their lobbying efforts. They also meet with other advocacy organizations in the chronic disease space, creating coalitions to tackle issues around insurance policy.
November is spent trying to launch these joint efforts before the state legislative sessions start in January. Once sessions begin, Chandhok and his team identify bill sponsors, and parse the language introduced.
Chandhok and the legislative affairs team work hand-in-hand with Julie Eller, now Director of Patient Centered Strategies at the Arthritis Foundation, to ensure their 55,000-60,000 active advocate volunteers are briefed on the proposed legislation. “We coordinate with local offices around the country to deliver in-person programming, provide talking points, and an action plan” says Eller. “From January to June, FiscalNote is simply indispensable,” says Chandhok. “We’re contacted by people in the states, they want us to know about different opportunities and to weigh in. Before FiscalNote, we kept track of legislation and hearings through a spreadsheet as things came up.”
Embracing Time Saving Benefits
Adoption of a new technology platform involves getting buy-in across multiple departments. In this case the Arthritis Foundation’s state directors were eager to get on board. “They quickly realized that the way we were doing it before was so incredibly inefficient, and they were glad to make progress,” says Chandhok. “In the beginning it was hard. We had to determine how much information we wanted to log, and how many bills we should track. But going to an excel sheet and logging all that was so inefficient that during the legislative season, we were eager to adopt anything that saved a second of their time.”
"Our whole history is in the program so we can measure our success and plan for the future."Ben Chandhok, Senior Director of State Legislative Affairs
Prioritizing Time & Effort
The Arthritis Foundation’s state legislative affairs team now organizes legislation by topic and issue area, and they can rank factors such as likelihood of passage, the number of volunteers in the district, the advocates’ specific interest areas, and their availability or interest in testifying. Through the platform’s Notes feature they also keep track of the levels of engagement.“
We contracted FiscalNote to help streamline that legislative tracking piece. Now we track 1000s of bills and prioritize,” says Chandok.
Eller manages grassroots efforts primarily using FiscalNote’s VoterVoice tool, but she relies on the legislative affairs team’s usage of the core FiscalNote platform to guide her advocacy efforts.
“Ben identifies the policy issues we will be working on, while the state director works day-to-day to get bills passed or defeated,” says Eller. “They’re tracking legislation across FiscalNote in their regions, and they might see they are going to have activity in either direction. This gives them a small window of time to put together an email to our grassroots advocates and get it out there. We have to act quickly. FiscalNote is our guidepost to see what legislation is out there and what’s likely to move”.
Before VoterVoice, Eller says they used to send very simple action alerts. “They were basic ‘This is how you contact your legislator’ messages every time. We very rarely set up digital campaigns, and if we did it was because a state director was tech savvy. It wasn’t used nationwide, and definitely not as a result of legislative action. Now we have the ability to elevate advocacy from just a localized, siloed activity. We’re creating partnerships. Our personal mission statement is to help patients turn their experiences into action that can create change and improve people’s lives.”
Value Story: How the process produced a win in Georgia
In January 2019, the Georgia House of Representatives introduced HB 63, which would reform health insurance step therapy protocols. Often, health insurers will make patients try and fail an insurer-preferred medication before covering the medication their doctor prescribed.
This was of special interest to the Arthritis Foundation, as patients with autoimmune Arthritis often encounter administrative burdens while trying to access the medicine that their doctor wants to prescribe.
Kristen Crawford, the State Director who covers Georgia, was made aware of HB 63 through the FiscalNote platform in the 2019 Georgia state prefiles, long before the bill was due to be introduced. The organization immediately mobilized on both the state legislative affairs side and the advocacy team in support of the bill.
Chandhok flagged the bill in FiscalNote, and Crawford was able to send a state update email to her relevant network a full three weeks before the bill was introduced on the floor. Advocate ambassadors then participated in a state legislative day in early January. Crawford was able to identify her top advocates through VoterVoice, and send them to meet with legislators in person to advocate for step therapy reform.
“Our ambassadors are people who take action outside of the regular Action Center,” says Eller. “We prepare guides for them, give them the opportunity to draft letters, and help them communicate directly with legislative assistants to develop a personal relationship. We have 1,200 folks currently signed up as ambassadors nationwide, and we were able to identify them through our advocacy engagement ladder. We tag them, and do some recruitment of that list, especially for those who live in and around state capitols, to turn them into a grasstops ambassador. That way, if we need someone to go meet with a legislator, or go to the statehouse, we have a shortlist.”
Throughout the early months of 2019, Crawford was able to keep her advocates engaged by providing updates on the bill’s progress, and urge them to reach out to lawmakers at key junctures as the bill passed the Georgia House and moved to the Senate. Advocates were encouraged to reach out to Georgia Governor Brian Kemp to educate him on the bill once it reached his desk for signing.
On April 25th, 2019, Governor Kemp signed the bill into law at a bill signing ceremony with members of the Arthritis Foundation’s advocacy network present. Crawford and Eller then sent a follow-up petition to their advocates, giving them a chance to thank lawmakers for passing HB 63.
“Our actions on this bill prove the value of advocates engaging,” says Eller. “This to me shows their value and why we use them they way that we do. Some folks think this can just be done by a couple of lobbyists, but we give our advocates training on how to look up a bill, look up their legislation, take action, and modify or personalize their message. This puts them in the driver’s seat.”
Eller also notes the value proposition of having a tool that was able to streamline the process for turning proposed legislation into grassroots action.
“None of that would be possible without VoterVoice and FiscalNote. These tools create synergy between what we do as staff, and pulls volunteers into a leadership role. Fundraising is fatiguing; patients want to help and might not have out of pocket money to give, but they do have time.”
That’s a sentiment Chandhok echoes.
"I always tell my boss to think back to what it was before FiscalNote, and then to think about what we can do now, and how much the program has grown. That growth is invaluable."Ben Chandhok, Senior Director of State Legislative Affairs
“I would describe FiscalNote as a Government Affairs software that makes your life more simple, from legislative tracking to recording actions, to digitizing the advocacy program itself. I always tell my boss to think back to what it was before FiscalNote, and then to think about what we can do now, and how much the program has grown. That growth is invaluable."
Chandhok also acknowledges that ultimately the tools are ways to elevate their members and their organization’s tasks and message.
“We don’t just say we’re mission-driven. We make sure that volunteers are front and center of our efforts and leading the way. When the bill passes and the issue is addressed, patients can now get previously inaccessible care, or they get through their appeals faster; seeing the actual difference. That is very rewarding. "
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