The Virginia chapter of the National Multiple Sclerosis Society (NMMS), of which I am a member, led the way for state advocacy across the country in support of policies that will benefit people living with multiple sclerosis (MS) and other chronic diseases, caregivers and their loved ones, and people who don’t have anyone else to speak up on their behalf.
Becoming an advocate is really easy, and you can take action from home by becoming an MS Activist and signing up for federal action alerts from the National MS Society. But there is something special about traveling to your state capitol, visiting the offices of your state legislatures, speaking your concerns, making your voice heard, and witnessing the legislative process in action if you are fortunate enough to sit in on a meeting of your state congress.
In January 2017, I traveled to Richmond, Virginia, to join other MS activists from across Virginia to collectively present three key issues to delegates and senators of the VA General Assembly. Fortunately, Ashley Kennedy, the senior manager of advocacy for the Virginia-West Virginia chapter of the National MS Society, made the process easy. She has a special talent for creating documents that assist us in clearly presenting the issues and being ready with supportive data and information to answer questions that may be posed during our meetings.
On day one of our two-day event, activists met to learn about the issues being presented by the society during this session of state congress. It was important to note that one of our issues regarding step therapy was being discussed in the VA Senate Commerce and Labor committee on the afternoon of our visits and in the VA House Commerce and Labor committee on the day after our visits. It was successfully passed in the senate, but failed in the house.
Timing is vital
It’s important to mention during our meetings that we understood specific issues were scheduled on the dockets in the immediate future; it demonstrated urgency and allowed committee members to become informed BEFORE making decisions. In 2017, the VA General Assembly session opened on January 11 and closes on February 25. A reconvened session is scheduled for April 5, primarily to discuss governor’s recommendations and vetoed legislation. There is not much time to take care of a year’s worth of business in only 46 days.
On day two, as we made the office visit calls, the building was packed with many other special interest groups attempting to present their own cases in support of various issues despite thunderous rain outside. It was somewhat chaotic and potentially overwhelming. But once you entered each office and could finally sit down to chat with a senator, delegate, legislative aid, or staffer, it was easy to gain their full attention, even if only for 15 minutes.
The night before our meetings, a friend and I researched each legislator we would meet the following day. It was easy to Google the individual legislator to find his/her personal website where issue statements and biographies were provided. This research was helpful in providing kernels of information that could serve as “common ground” when talking with the legislator or their staff. Sometimes developing a strategy of attack ahead of time can be helpful.
Important things to remember when you speak with your legislator or their staff
- Thank them for taking the time to speak with you
- Mention if you are a constituent or state a connection you may have to someone who is a constituent in their district
- Clearly state who you are representing and what your main concerns are
- Present them with a folder of hand-outs summarizing your issues and request (Ashley from the NMSS provided us with folders to leave with each office and reference during discussion)
- Ask if they are familiar with your cause (for example, issues directly pertaining to people affected by MS)
- Explain the cause/condition, if necessary, and tell your personal story
- Present the legislative issues that are on your agenda, providing specific details on bill numbers, sponsors and co-sponsors, committee assignments
- Explain details of the proposed legislation and relate how these issues would affect you personally or someone you represent
- Ask for business card(s) and contact information
- Thank them again for their time and support
- Send a personal follow-up thank you note
Who are my state legislators?
Each state’s government website offers different ways to identify your legislators based on your address. Some are easy to navigate while others are a bit more complicated. One website I found that was simple and straightforward was Open States. The data presented on Open States comes from publicly available information, and links to individual legislator pages on state websites are provided.
Check the 2017 NMSS State Action Day calendar to learn more about when volunteers representing the NMSS will be visiting your state capitol. Not every day is listed (e.g., Virginia’s event is not listed) and there is not an event scheduled in every state. If you want to get involved, you should contact your local chapter of the NMSS.
Please note that while Ashley scheduled our meetings with at least 45 VA legislators, some chapters require that you call your legislator’s office independently to schedule your own meeting on your state action day. Advance planning is often required.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.