The Power of Advocacy: Two Leaders Discuss Health Policy Advocacy for Women, Children, and Families

Rizwana Biviji, PhD, MS; Natalie Papini, MA; Alicia A. Dahl, PhD; Molly E. Waring, PhD; & the Women’s Health SIG

The Women’s Health Special Interest Group and the Child and Family Health Special Interest Group co-hosted a webinar on using social media to advocate for women, children, and families. The speakers provided strategies to leverage social media to enhance your policy advocacy efforts and connect with lawmakers to make your work more visible.

To continue these conversations, we reached out to two eminent leaders actively advocating for improving the health of women, children, and families: Dr. Jennie Bever, Executive Director and CEO of the nonprofit organization 4th Trimester Arizona, and Julie Hoffman, Consultant, and Chair of Advocacy, American Diabetes Association.

How would you define policy advocacy?

Bever: While a big piece of policy advocacy is legislative and one that makes the most noise, a lot of policy advocacy is not done legislatively. It often takes less time if you start with things that are not legislative because that means fewer politics. And health policy often is not very political.

Hoffman: The most rewarding and effective policy advocacy work is inherently creative and strategic, a give-and-take in the arts of emotional intelligence and communication. Nothing affects legislators and policymakers more than a compelling story with a narrative of lived experiences that can be leveraged to make incremental or substantial policy changes. Ultimately, health policy advocates want to earn a seat at the table where decision-makers and other stakeholders do much of the negotiation and implementation of policy nuances.

What are some of your current advocacy efforts related to maternal health?

Bever: Last year, we advocated for maternal mental health resolution making May a maternal mental health month. We worked with Arizona house member, Amish Shah, who was very interested in helping us push that forward. While working with his office, we became more insightful on how long the process takes, as well as to approach certain issues in non-legislative ways. We focused on having insurers define perinatal mental health providers as identifiable providers. Currently, women with mental health needs see providers who may or may not be specialists in perinatal mood and anxiety disorders unless they connect with organizations like ours that refer them to specialists in this area. I am also involved in advocacy around breastfeeding support, through which I was invited to serve on the Maternal Mental Health Advisory Committee that was legislatively mandated and chaired by AHCCCSS (AZ Medicaid agency). 

Hoffman: A critical issue in Arizona is Medicaid's mandatory tiered dis-enrollment and eligibility redetermination, beginning April 1, 2023. AHCCCS estimated up to 634,000 members are at risk of being disenrolled unless these adults, families, and children can document current eligibility and renew enrollment. For members with a chronic disease or medical condition, we want to make sure there's a plan for continuity of care and access to prescription drugs. We are also participating in a national pilot program that is exploring bringing the National Diabetes Prevention Program (NDPP) to AHCCCS. States that have implemented the NDPP into Medicaid services have seen positive outcomes in delivering more equitable whole-person care.

What is an example of a successful advocacy campaign you’ve worked on that resulted in health policy change at any level of government?

Bever: Our work through Mom Congress on the Momnibus bill resulted in a lot of other bills that have been passed. The Pump Act was also a part of the Momnibus bill. One of the other pieces was around extending Medicaid coverage for postpartum moms to a year, both nationally and in Arizona. Prior to this, Medicaid coverage was up to six weeks postpartum. And, of course, I am only one part of this huge success. In addition, the passing of the maternal health resolution in Arizona was also a win. Even though it did not change any policy, it did raise awareness, which is the first step.

Hoffman: In 2022, after several years of delays, HB2083 - AHCCCS Diabetes Management was signed by the Governor. This law provides up to ten hours per year of diabetes self-management training (DSMT) for Arizona's AHCCCS members. The American Diabetes Association, Arizona Diabetes Coalition, community partners, and policymakers worked together for years, paving the way to enact this significant legislation. Patient education and training will build confidence and prevent the escalation of complications and comorbidities. As a policy issue, this law will result in lowering healthcare costs and improving workforce health, which translates into saving money for taxpayers. The Arizona Department of Health Services' Diabetes Action Plan plays an integral role in supporting our issues with relevant data, effective narratives, and policy priorities.

What are the challenges that one should anticipate?

Bever: The biggest challenge that I had to overcome was a lack of patience. With experience, one realizes that changes don’t happen overnight. And the other challenge relates to timing. You are often told things like, "it is probably not going to happen this year" or "this isn't the right year to be going down this path."

Hoffman: One of the most frustrating challenges is that change is often slow and incremental. The collective time and effort dedicated to a policy issue can be a capacity burden on small or underfunded organizations, no matter how worthy the cause. Partnerships can help alleviate some of that burden, but there's often a compromise or loss of autonomy in one's pursuit of the original policy goal. It's always smart to research and roleplay anticipated dissent or opposition to an issue. Understanding the motivation and purview of the opposition opens the door for negotiation. Navigating these challenges takes a team and is dependent on relationships with the community, academia, lobbyists, policymakers, and other patient advocacy organizations.

For someone who is new to the world of policy advocacy, what advice would you give them to successfully begin their advocacy efforts?

Bever: Partner with an organization that is already working in that area to get a foothold. You could start by volunteering and gaining a better understanding of the advocacy world. Also, look for organizations that are involved in larger-scale health advocacy efforts and provide low-cost training and support for advocates who want to get involved. And get involved both at the state and national levels because you may be able to make more changes at the state level initially than you can at the national level.

Hoffman: Empower yourself and simply show up in person or virtually. I'm a people person and have developed many incredible relationships from walking into a room where I didn't know anyone. The advent of virtual meetings has opened the door to policy engagement across the country, and similar meet and greets can occur in the chat box. I recommend getting on newsletter and agency email lists, attending university symposiums, attending legislative health committee meetings, and contributing to state or county health improvement plans. Also, read your legislature's new health bills and search former bills within your topic of interest. There's a place for everyone in health policy engagement. If you're ready, there's a place for you.