August 15, 2024 | Office of the President & Chief Research Officer

Stanley Manne Children's Research Institute President's Message

The Powerful Reach of Our Legislative Advocacy

Dear Teammates,

Researchers at Manne Research Institute are at the forefront of advancing our understanding of pediatric conditions and diseases through groundbreaking discoveries in basic science, translational research, clinical studies, and population research. Beyond their work in the lab, our researchers play a pivotal role in shaping healthcare policy by bringing their expertise and data to the attention of legislators and policymakers. This crucial advocacy is made possible through the strong collaboration with Lurie Children’s government relations team led by Susan Hayes Gordon, Senior Vice President and Chief External Affairs Officer, and Jill Fraggos, MPH, Vice President. Their efforts are instrumental in ensuring that science and evidence-based data drive legislative decisions impacting children’s healthcare and well-being, solidifying the partnership between government affairs and the research institute as a force for advocacy. 

Susan and Jill refer to themselves as “the process people,” drawing on their strong understanding of the political environment and the strategic steps involved internally and externally in lobbying and advocacy to navigate legislative and governmental procedures. They are much more than this, however. The relationships Susan and Jill build with local, state, and federal legislators and our researchers and physician-scientists are crucial in opening the door for evidence-based science to drive the policy-making process. Importantly, positioning research front-and-center via our subject matter experts gives credibility to Lurie Children’s legislative requests.

As a part of their government relations strategy, Susan and Jill collaborate with our researchers to produce expert testimony, participate on committees, and speak with legislators one-on-one about issues important to children’s healthcare and pediatric medicine. For example, Angela Waanders, MD, MPH, who studies the genetic underpinnings of cancer, was key in the successful passage of an important bill that mandated insurance coverage of cancer screening and genomic testing. Nancy Kuntz, MD, who researches treatments for neuromuscular disorders, helped successfully lobby to have spinal muscular atrophy and Duchenne muscular dystrophy testing added to newborn screening panels. Through ongoing conversations with the Illinois Department of Healthcare and Family Services, pediatric obesity researcher Justin Ryder, PhD, informs legislators about the disease of obesity and advocates for coverage of the new class of anti-obesity drugs (GLP-1 receptor agonists) for children and adults. 

During the most recent Illinois General Assembly (2023–2024), several healthcare-related bills Lurie Children’s supported with expertise from our researchers were passed and have been signed into law or are awaiting the governor’s signature. Carolyn Foster, MD, MS, and Rishi Agrawal, MD, experts in children’s home healthcare, provided testimony in support of allowing family caregivers to become in-home caregivers for their medically complex children and be paid for the care they give their children at home. Susanna McColley, MD, shared her expertise in pulmonary medicine with legislators as they considered a bill that required health plans to limit co-pays and costs for prescription inhalers.

The government relations team’s work with the medical center and the research institute shapes public health policies and strengthens our relationships with legislators. Our reputation as leaders in children’s healthcare and research leads to legislators and their staff proactively initiating conversations with Susan and Jill when they need data or information from our experts. No matter the approach, though, Susan and Jill are grateful to be able to call upon our talented and dedicated researchers and to engage with them in advocacy to advance the health, safety, and well-being of children and their families.