At today’s Chronic University, we had a great conversation about how patients can get their voices heard when lawmakers are writing, debating and passing healthcare legislation. And it all comes down to this:
Too often, we think of government as something that happens far away, and with experts and lawyers and smoky back rooms and well-heeled lobbyists in sharp suits. (That’s what it looks like on TV, anyway.) The daily reality is quite a bit different, as our panelists shared.
Curtis Warfield, an outstanding patient advocate, first became involved when he experienced first-hand how different laws and policies affected him and the young woman who donated her kidney to him. He also found that lawmakers and their staff were eager to hear his story and help.
Julia Boles, Grassroots and Advocacy Manager, National Psoriasis Foundation, is an expert in her field and sees on a daily basis how much lawmakers rely on the experience of citizens and patients to make policy decisions. Knowing how a bill will help or hurt constituents is important to most lawmakers.
Rep. Marcus Riccelli, a state representative in Washington state, is on the House Healthcare Committee and also works in healthcare. He also told a story about a mom with a sick daughter who inspired him to sponsor a bill and work it through the rest of the Legislature to passage.
They all cited personal relationships as being important to advocacy. Here are a few of the key takeaways:
- Don't wait until the legislature is in session to connect. Interims and recesses have more relaxed schedules that allow elected officials more time to meet with constituents. If you can pull together a group of 5-7 people with a common interest, that's even better.
- Build relationships with staff. Too often, people think that only the elected official matters, and they treat the aides like cheap substitutes. Not true! Elected officials rely on their legislative and policy aides. They can be subject-matter experts who advise the elected official on how to vote, for example. They also can control the schedule, and thus, your future access. And finally, many aides go on to have long careers in public service. Treat them poorly now, and you may find a cold reception once they get elected themselves.
- Know what else a legislator is already working on. You may help add perspective, and it may help you find synergy between related issues.
- Stick with it! Like all relationships, they take time to build. Even if a legislator doesn't seem open to your policy idea the first time, don't give up. Continue the dialogue and take the time to learn her or his perspective on the issue. By having repeated, open conversations, you may be able to find a way forward.
Finally—It’s great to be in-person, but it doesn’t have to be. So much of life has moved online, including government. Whether you are looking to build a relationship with your elected official, or want to testify at a committee hearing, there are likely some remote options. This is crucial for those of us who cannot travel to our state capitals. Rep. Riccelli said the increase in civic participation has been astronomical due to the move to virtual meetings, and his and other states are likely to continue to provide this access.
Our appreciation to all of our panelists and the many patients who participated in the panel!
Things you can do RIGHT NOW!
- Send a message your elected representatives about Chronic Disease Month—here is some suggested language to make it easy, but also space for you to tell your own personal story.
- Review the CDC’s Rollcall of Champions—dozens of legislators across the country supported bills supported by chronically ill patients and families. If your legislator is one of them, say thank you!
- Sign up on the Chronic Disease Coalition website for email updates from us.
- If you’re interested in national issues, plan to use the August congressional recess to connect with your U.S. Senator or Representative. They will likely be going to events, holding town hall meetings and visiting groups in the district. Check their websites for public events and introduce yourself.
- Apply to be a part of our Ambassador Program and get involved in creating local, state and national change to protect chronic disease patient rights.
- Want more ideas? Download our Advocacy Toolkit for a full spectrum of approaches!