The Advocacy Frontier: Navigating PBM Reform, Step Therapy, and More

Marissa Shackleton, executive director, The Elliot Lewis Center

Explore how state policies on copay accumulators, PBMs, and step therapy are shaping the future of infusion care—and what you can do about it.

Marissa Shackleton is the executive director at The Elliot Lewis Center (ELC) in Wellesley, MA, a leading multiple sclerosis care center. Since joining ELC in 2011, she has driven operational growth, expanded patient access, and overseen the infusion suite, clinical research, and financial functions.

A passionate advocate for affordable, high-quality care, Marissa collaborates with patients, providers, pharmaceutical companies, and insurers to navigate access barriers. She actively works to improve policies that impact access to disease-modifying therapies and address regulatory and legislative issues impacting infusion therapy.

Marissa serves on the Boards of Directors for the Infusion Access Foundation and The ELC Foundation and is an active member of the advisory committee for the National Infusion Center Association (NICA). She is involved with the National Multiple Sclerosis Society, advocating at MS State Action Day and participating in fundraising initiatives such as Walk MS and the Boston Marathon.

Can you provide an overview of your session at NICA 2025?

Shackleton: During this panel discussion NICA and Infusion Access Foundation Director, Kindyl Boyer, moderated a conversation on the importance of state advocacy and how state policies can influence NICA member companies’ businesses. This session highlighted NICA’s state policy priorities, how NICA members can engage with their state elected officials, and why state advocacy matters.

In what ways have you seen state-level legislation directly impact infusion providers or patient access to therapies?

Shackleton: We opened the panel by asking the audience to anonymously share their level of advocacy experience. One-third of the audience didn’t know their state lawmakers, another third knew who their lawmakers were but had never reached out, and the remainder had limited or occasional contact. This really set the stage for discussing how approachable state level advocacy can be, and how important it is for business. Senator Reeves put it simply: “You want to know them before you need them.”

I began with my own story of advocacy. Just over 2 years ago, I would have responded to the poll saying I don’t know my state lawmakers. In May 2023, Kindyl Boyer, advocacy director, reached out regarding a copay accumulator bill hearing in Massachusetts. She asked me to provide testimony and really encouraged me to go in-person and provide oral testimony. I was nervous but felt strongly about the topic and agreed to deliver 3 minutes of oral testimony at the State House, explaining the issue in a way that helped legislators understand and convey the human impact.

The experience was nerve-wracking—but afterward, I felt exhilarated. I felt so accomplished that I had played a small part in something that had the potential to impact so many patients.

Since then, I’ve testified again on copay accumulators and recently on pharmacy benefit manager (PBM) reform, published op-eds in The Boston Globe and local media, and participated in 3 annual State Action Days with the National MS Society. I’ve also engaged at the federal level through NICA and Infusion Access Foundation Hill Days. That one 3-minute testimony truly launched my advocacy journey.

What practical advice would you give to providers or clinics who want to begin engaging with their state representatives but feel unprepared or underresourced?

Shackleton: We emphasized during the session that advocacy is more accessible than people realize. Start small, look up your state representative and senator, follow them on social media, and sign up for their newsletters and NICA’s State Action Alerts. These alerts give you direct opportunities to email or call lawmakers on priority issues in your state.

When you’re ready to be more involved, attend an in-person event, consider providing written or oral testimony, and/or write an op-ed. We encouraged attendees that weren’t sure where to start to reach out to a panelist or connect with the NICA Advocacy Team.

As infusion providers, we are in a unique position of understanding both the policy side and the patient impact. I think that is what has made my advocacy so successful: I can discuss the policies like step therapy, copay accumulators, and PBM reform, but more importantly, I can share what that means for real people.

You don’t need to be a policy expert on a topic to be effective. Telling patient stories is what resonates most. Legislators remember those personal stories long after the meeting is over. It makes the issue real for them—and that’s where the change starts.

What emerging state-level threats or opportunities should infusion providers be particularly aware of going into 2026?

Shackleton: The top advocacy priorities for NICA include copay accumulators and maximizers, nonmedical switching, step therapy, pharmacy benefit managers, white bagging, and government price setting.