The first day of BIO’s Patient Health & Advocacy Summit concluded with a breakout session entitled “Advancing Your Agenda: Best Practices in State Advocacy.” This discussion focused on collaborative ways that organizations can build a successful state advocacy campaign while also effectively building awareness and engaging lawmakers.
The panel’s moderator was Tim Martin, Director of U.S. Government Affairs for Amgen, an Ally sponsor at the Summit. Tim kicked off an engaging discussion by highlighting the big differences between state- and federal-level advocacy, while specifically focusing on the challenges that advocates face out in the states. He emphasized one specific challenge, which is the sheer number of influencers present in each state. Remember, there are 50 state insurance commissioners (of which only 11 are elected), 50 Governors, and hundreds of state legislators spread out nationwide. Tim’s point here is that the number of people who can influence an outcome of legislation can be daunting, so being able to engage with all of them regarding any issue important to a particular organization can be difficult.
Even under normal circumstances, educating and working with state legislatures in 50 states is challenging – because of their diverse audience(s), and the consistent turnover of elected officials and staff. But in this current landscape, it is even more difficult to accomplish these things during a period of immense change in health care on both the Federal and state levels. Inside an organization, it’s simply impossible for let’s say a 5-person state government relations team to engage effectively with hundreds of state legislators across our country.
Pam Traxel, Senior Vice President of Alliance Development and Philanthropy for ACS-CAN, shared her solution to this issue. She recommended utilizing a large volunteer network throughout the states. ACS-CAN launched their nationwide volunteer network and designated a “lead volunteer” in every state, as well as in every Congressional District. This volunteer network is comprised of patient advocates throughout all 50 states. These volunteers have proven to be far more impactful than any lobbyist because they are able to influence lawmakers by telling personal stories to explain how certain legislation could directly harm their community.
The common theme of the panel was effectiveness and power brought by the patient voice. Patrick Stone, Director of State Government Relations for the National Psoriasis Foundation, shared a compelling story about one of his trained volunteers that had an impact on state legislation. Patrick noted that it’s not only important to have patient advocates present, but also train them on how to effectively communicate with state legislators by relaying your main concerns or suggestions regarding the specific legislation. Elevating that patient voice is a key factor in advocacy work, but needs to be paired with constant, productive communication with legislators. Traxel touched on the importance of creating meaningful relationships with lawmakers. Tim Boyd, Director of State Policy for the National Organization for Rare Disorders (NORD), noted that this can only be accomplished over time, by hosting events in states, that aren’t centered around legislative conversations. This allows patient advocates to interact with legislators in their Districts and also grow their network.
In conclusion, Martin asked each panelist to share one message they would like the biotechnology industry to hear about best practices in state advocacy. Dr. Madelaine A. Feldman, of the Alliance for Transparent and Affordable Prescriptions, and Vice President of the Coalition of State Rheumatology Organizations, appreciated how unbiased the industry has been, and she commented on the cordial nature of the relationship between patient groups and industry. More interactions, such as the BIO Patient & Health Advocacy Summit, should occur between organizations not only to share best practices in state advocacy, but also what each find to be our most challenging state aspects of advocacy and how to combat them.