On November 21, the Health Care Council of Chicago, in collaboration with Golin Health, held a virtual discussion exploring the distinctive challenges and opportunities in rare disease treatment, emphasizing the importance of advancing health equity.
Moderator:
Jaimee Reggio, U.S. Managing Director, Golin Health
Featured Panelists:
Kimberly Brock, Executive Vice President, Health Equity Lead, Golin Health
Valeria Cohran M.D., M.S., Professor of Pediatrics, Associate Chair of Diversity Equity and Inclusion, Medical Director of Intestinal Rehabilitation and Transplant, Division of Gastroenterology, Hepatology, and Nutrition, The Ann & Robert H. Lurie Children’s Hospital of Chicago
Michelle Rivas Notestine, Senior Manager, Product Communications, Amgem
Watch the Webinar:
Discussion Highlights
The conversation highlighted the persistent challenges rare disease patients face, particularly those from underserved communities. Barriers such as limited access to diverse genetic data, systemic biases in diagnosis, and financial instability were central themes. Panelists emphasized the role of cultural competency, patient advocacy, and inclusive research in advancing health equity.
Speakers also discussed the importance of community-driven solutions, stakeholder collaboration, and leveraging emerging technologies like AI to address diagnosis and treatment access gaps.
Key Takeaways
Culturally Competent Care: Effective care begins with understanding cultural nuances and addressing implicit biases in health care delivery.
“Everyone has biases. We have to look and see how our biases are playing a role in how we are treating patients. There is no difference in the amount of bias health care providers have than the average population.” — Valeria Cohran, The Ann & Robert H. Lurie Children’s Hospital of Chicago
“We need more people of color in medicine to help bring cultural empathy.” — Michelle Rivas Notestine, Amgen
Inclusive Research Practices: Broadening the representation in genetic studies and clinical trials is critical to improving outcomes for diverse patient populations.
“Nearly 80 percent of genetic studies primarily focus on the European population. So think about what that means for everyone else…it is essentially trying to solve a puzzle with most of the puzzle pieces missing. Without diverse data, we are slower to diagnose and slower to develop an effective treatment.” — Kimberly Brock, Golin Health
Patient Advocacy as a Catalyst: Empowering patients to advocate for themselves and others fosters systemic change and raises awareness of rare diseases.
“Patients must continue to put information and education within their toolboxes so that when they walk into a doctor’s office, they have some level of information to be able to engage with providers. Or make sure there is someone there with you to be that advocate and ask the questions. The provider-patient relationship is a partnership. Don’t be afraid to speak up if you are feeling uncomfortable or to ask the hard questions.” — Kimberly Brock, Golin Health
Leveraging Technology and Collaboration: AI and telehealth offer opportunities to enhance diagnostic accuracy and reduce delays, but equitable access to these technologies remains essential.
"AI has potential, but without careful implementation, it risks perpetuating existing biases in care. But I know there are ways in which we can use it in a productive manner" — Valeria Cohran, The Ann & Robert H. Lurie Children’s Hospital of Chicago
Multi-Stakeholder Partnerships: Meaningful progress requires collaboration between industry, health care systems, policymakers, and community organizations to bridge gaps in care.
“There are great organizations that are doing the work. Raising awareness and elevating the voices of these organizations is essential. Through the Rare Is Program we have a Global Advocate grant where we give $5000 grant dollars into the hands of really small mom-and-pop advocacy organizations around the world because they have the expertise. They understand what the needs of the community are.” — Michelle Rivas Notestine
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