Advocating For PANS Related Legislation In Your State: An Interview With PRAI Founder, Jessica Gavin
Anna Conkey: Thank you so much for joining me to discuss how parents can get the ball rolling on legislation related to PANS in their state. For those who aren’t aware, Jessica spearheaded a successful effort to put into place a PANS/PANDAS advisory council in her home state of Virginia and we are really grateful to her for sharing her knowledge with us.
I just want to mention first for those who, like me, weren't paying attention when Schoolhouse Rock "How A Bill Becomes a Law" was shared in school, that the Open States website can help parents find both their state assembly person as well as their state senator.
Jessica, can you tell us what the first step is after identifying legislators?
Jessica Gavin: When passing a bill, you should think strategically about who you want to sponsor it. This will be different for every state depending on what's happening politically at the time. There are so many scenarios that could come up when thinking about legislation that would influence who you would choose, so it's really important to think it through. If you have a very heavily leaning republican House or Senate, you'd want to likely consider an influential republican since they have the best chance of influencing their own party. If you have a budget deficit in your state, you might want to consider a sponsor who has a strong relationship with the appropriations committee. If you have a lot of bills for similar illnesses that have similar bills to your own, you'd maybe want to consider who holds those bills because you know they have already convinced the legislature of the importance of healthcare and likely have a strong community of support who might help rally for your bill. There are a lot of different scenarios to think about. So, my first bit of advice is know your state. Don't just do what someone else did successfully in their state because most states are territorial and they don't want to be told that "this is how Virginia does it." Sometimes that's enough to dissuade them from doing it or trying to do it differently. So really in a nutshell, know your audience.
Anna: Excellent, that’s really helpful. Can you share the next step?
Jessica: Once you have your sponsor identified, ask their advice on how to get this bill through. Who can they get to help so you don't have to? They might have eight senators they know will vote [in favor of the bill] because they know that this type of bill is in their wheelhouse, so let your sponsor do that work. You can then focus on the other people who need to hear your message. But ideally, everyone will know what the bill is for before it hits their committee for a vote. Get in front of as many legislators as possible.
Anna: What suggestions do you have for the actual meeting with legislators?
Jessica: Well it's interesting because once again, different tactics would be employed depending on who your audience is. If I was meeting with a senator with young kids I might approach that meeting differently than I would if I was meeting with an older senator with no children, or a young new politician in their first year, but in all of those scenarios there are certain things you can do to get your voice heard. For instance, dress up, smile, be personable. Sell yourself! In all scenarios, let them know that there are many families just like yours. Don't just tell your story, but casually (or not so casually) drop the 500 advocates you have in their district who are equally as passionate. Legislatures want to do good, but they also want to get re-elected so they need to know this bill means good things for them. Constituents who they are eager to please care about this bill. Find out what your legislature is currently trying to get passed. What have they voted on in the past? What type of bills do they hold? And then, always, asking them point blank before you leave, "Will you support this bill?" If they don't say “yes,” ask a follow up. "What else do you need to learn or know before you could put your support behind this bill?" Then, whatever it is they tell you, meet that need. Talk about your kids. Talk about the pain. Talk about the financial cost of not taking action. Have actual clear numbers and data. Be ready to answer hard questions. Be ready to say "I don't know" when a hard question is asked, but then use that as an opportunity to get back in front of them once you find out. Name drop doctors who are treating the illness locally if any. (I would likely avoid ones with controversy around them). Ask them about themselves. You want them to feel like when you leave they know your name, they know what you want, and you know what's stopping them from saying “yes” right then and there.
Anna: What would you suggest after these initial meetings?
Jessica: If you didn't get their support in that meeting, you have work to do. Whatever the reason was they told you they couldn't say yes, whether they need to learn more about PANS or want to talk to a legislator that is also a doctor. Go find XYZ legislature next and get their support. Always try your best to take someone from their district with you. That's who matters to them--their voters. I would follow up with a handwritten thank you note right after every meeting. And for those who said they'd vote in your direction, perhaps an email thanking (and reminding) them of your bill before it hits their committee. For those who didn't give their open support, a hand written thank you, and a follow up call or drop by to answer those unanswered objections.
Anna: Are there things people should definitely not do?
Jessica: We did a lot wrong when we got our bill passed that miraculously did not prohibit us from actually getting it through. For instance, you really want to meet with someone or network your way in to someone on the appropriations committee. This is the group who typically decides how much the bill will cost. If they don't know anything about what you're asking for, a bill could be tagged with a far larger budget then is necessary simply because the committee is misinformed about what it takes to pass the legislation. You don't want a lot of money on your bill. It could kill it quickly. You also don't want to have anything to do with "controversy." The goal is for your sponsors to feel good about what they're supporting, if they think somehow your bill is going to cause them future headaches because of something "controversial" you may end up losing their support. Be humble, but also matter of fact. PANS is real as per the fact that we have roughly 20 top notch hospitals now either researching or treating it. And these kids need help. This whole controversy conversation should now be over. But I would anticipate a legislature will Google it, so make sure you're ready to explain how anyone who knows the latest research realizes that this is no longer a controversial issue and then name drop those highly regarded experts (Dr. Jenny Frankovich, Dr. Dritan Agaillu, any neuroimmune scientists, etc).
Anna: Can you share for those who don’t know then how the process goes once the bill is introduced?
Jessica: You want to get as many co-sponsors as possible. Many times legislators will sign on to bills who they know people who think like them support. Send masses of emails and telephone calls telling them to support XYZ. Reach out to similar advocacy groups who do work like you do, have them also call and support the bill. Get your mom’s church to announce the bill to their people to support it, tell your OCD group, tell your autism group, tell the Tourette's group, NAMI. They want to hear there is a massive outcry for this. Everyone wants it! Blow their phone lines up.
Anna: Great advice. Any last suggestions?
Jessica: Shower everyone you come in contact with gratitude, not as a tactic, but because they work hard for you. Let them know how much you appreciate when someone steps up for our kids, because it's the only way we'll get to where we need to be.
Anna: Excellent. Thanks again for taking the time to share your knowledge Jessica. We really appreciate it and know families of children with PANS and PANDAS will find this helpful!
*Parents, please feel free to email us for a copy of one page and two page information summaries created by Foundation For Children With Neuroimmune Disorders on PANS/PANDAS you can share with your legislators. This helped us quickly pass legislation through the assembly in Wisconsin.