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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:

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!