This session included Brooke Abbot and Amber Tresca, co-founders of IBD Moms, and Brett McReynolds, former VP of Public Policy at the Autoimmune Association. They came together to discuss how healthcare policies impact patients and what you can do to advocate for your needs.
Recorded October 2021 at the Autoimmune Community Summit.
Healthcare Insurers and their pharmacy benefit managers have numerous tools to control costs. Unfortunately, cost saving measures often come at a steep expense to wellness. A list of anti-patient policies comes from Let My Doctor’s Decide:
“Many of you,” began Brett, “have probably gone through step therapy and not even known you were going through something. It’s also called fail first, and under these programs you may need to ‘fail’ on a drug that the insurance company prefers, before getting to the drug that your doctor prescribed.”
To fight against these patient-unfriendly policies, you can become a healthcare advocate. As an advocate there are several ways to bend the ear of your legislative representatives.
“Postcards, letters, or emails,” said Brooke. “Postcards are very specific. It’s a call-to-action, a quick ask to support an action. Advocates can flood the office with them. Letters are more personal; you can tell your story and give a more in-depth idea of your day-to-day. An email is used when you have direct contact with the legislator or their office; for quick updates.”
Advocates use these methods regularly, “and they’re effective,” added Brooke.
TIP: know the Bill Numbers of the legislation you are advocating for.
“It’s helpful to prep ahead of time,” Amber asserted. “Prepare what you’re going to say, and have that bill number with you. But it’s also helpful to identify yourself as a constituent, that you live in their district.”
“Oh,” added Brooke in an appeal for kindness and restraint, “remember that the people answering the phone are lower staffers who may be as young as 16 or 17 years old. Their job is to take your phone call, write down all the information you give them and give that to their boss. Just remember, it might be a kid you’re talking to.”
Locally, it’s easier to set up than you may think. On the representatives’ webpages, you’ll find contact info for their different offices. Ask for the health policy person and identify yourself as a constituent and you can ask about local townhalls or events.
Federally, advocates often participate in “Hill Day” – an event organized, usually by a nonprofit or advocacy organization, for the purpose of having live (or virtual) discussions with representatives.
“Make sure,” said Amber, “that you know what you’re advocating for that day.” If you are attending with an advocacy group you can expect some coaching and clarification on what issues you’ll be discussing. “You don’t have to be an expert”, Amber added, “what’s important is that you share your story.”
TIP: Keep staff member contact info and use it to check in on progress every month, or to thank them for passing legislation you advocated for. Keep the lines of communication open.
You may have an opportunity at some point to share your story, in brief or in full. Practice it. Share it out loud. Get feedback. Then if you get asked to share, you’ll be ready. Good storytelling that characterizes the importance of the legislation you are advocating for, matters.
There’s value in knowing your legislators. You can subscribe to their emails or follow them on social media. Tapping into their schedules and knowing their policy positions helps you build better communication with them.
Amber explained, “One of my senators – veteran’s issues are very important to him – and inflammatory bowel disease is an issue that affects veterans. So, when I’m visiting or reaching out, I’ll bring that up. It’s important to have a way to connect on a personal level.”
TIP: you can follow representative’s activities and votes on Congress.gov.
“It’s important,” said Brooke, “to look at the history of big pieces of legislation that got passed. When we think about amendments to the Constitution during times when it was hostile in congress or think about Martin Luther King and the Civil Rights and Voting Rights Acts – how he showed up every single day for weeks sitting outside waiting for Lyndon Johnson to say ‘okay’”. There is a noble history of long fights to pass legislation. When you become an advocate, you become a part of those noble causes.
It also helps to remember that our representatives are people too. You may be surprised to find that they or their staff struggle personally with issues similar to your own.
We tackled the most pressing topics that impact patients and caregivers living with autoimmune conditions.
The Autoimmune Association advocates for policies important to people living with autoimmune disease and their families
