Policy Corner: Insights from the 2024 INS Annual Meeting and Advocacy Session

In May, I had the privilege of speaking at the Infusion Nurses Society (INS) 2024 Annual Meeting. INS is “an international nonprofit organization representing infusion nurses and other clinicians engaged in the specialty practice of infusion therapy.”

The organization has been around since 1973, bringing resources and learning opportunities to the healthcare professionals who care for infusion patients. Originally a US-centric organization, the society now has a global footprint and sprawling reach. The infusion nurse who administers your infusions may very well be a member of this organization.

The INS Annual Meeting & Exhibition is a multi-day event that “brings together hundreds of infusion therapy professionals from all over the globe to learn about the latest improvements to patient care and see the newest products on the infusion market.” When organizing the event, INS staff and board members assess educational gaps in clinical practice and build educational sessions to address those gaps. If you’ve ever wondered how healthcare professionals stay up to date on ever-evolving clinical advancements, one way is through professional conferences. INS’s Annual Meeting is an opportunity for nurses to learn more about patient care and new products and earn Continuing Education (CE) credits, which most states require nurses to obtain every two to three years.

This year, the INS Annual Meeting was held in Kansas City, Missouri, and it included four days of educational speakers, exhibitors, and workshops. I had the opportunity to hold a session on patient and provider advocacy. My goal was to connect with infusion nurses who have likely witnessed numerous injustices inflicted upon infusion patients while attempting to access or afford their medication. I wanted to meet nurses where they were and provide tips on building an advocacy plan that worked for them rather than guilting an already hard-working group of professionals into doing more.

 

 

The session was titled “Advocacy That Works For You,” and my goal was to (1) define access pain points and their political solutions, (2) identify opportunities for advocacy involvement, and (3) discuss creating an advocacy plan that fits into your schedule. I began by defining step therapy, non-medical switching, copay accumulators/maximizers, and pharmacy benefit managers (PBMs), and I provided real examples from our patient champions. I discussed the state and federal political solutions to each of these issues and our progress to date: 36 states have passed step therapy reform, 19 states and Puerto Rico have passed “all copays count” legislation, and six states have passed rebate “pass-through” laws that would curtail PBM practices. Regarding federal legislation, we discussed the Safe Step Act, the HELP Copays Act, and the multiple federal PBM bills I discussed in an earlier issue of the Policy Corner.

I pointed out quick and easy advocacy involvement opportunities that anyone reading this article can adopt. An easy first step to getting involved is to identify one or two advocacy organizations that align with your values (if you are reading this article, I would hope that means the Infusion Access Foundation is one) and sign up for their newsletter and action alerts. You can do so for the Infusion Access Foundation here. The next step up the “advocacy ladder” is testifying. This can be done in person, virtually (depending on the state), or by submitting a one-page or even one-paragraph testimonial statement on your state government’s website. The Infusion Access Foundation advocacy team is always here to help draft a statement and will let you know through action alerts when these opportunities arise. The following “rung” on the advocacy ladder was participating in a Hill Day at either your state or federal capital. The Infusion Access Foundation hosts a Hill Day each year, and we would love to have any interested infusion patient apply to participate. Our next Hill Day is closed for volunteers and will be taking place on July 24, but we will be sure to send out our application for 2025 at the start of next year.

Next, I discussed tips and tricks for handling meetings with lawmakers, such as knowing you do not have to be an expert on the legislative process or the bills we support – you only need to be an expert on your own life. We discussed being mindful of jargon and practicing your “elevator speech” before walking into a room with a lawmaker or their staff. Lastly, I brought all of the components together and left the audience with some homework that I’ll leave for you as well – what is one thing you can do today to start advocating for yourself and infusion patients?