Episode #419 Why Patient Voices Matter in Public Health Policy, With Shanthi Hegde
- Laura Hollabaugh
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- Aug 25
- 3 min read
On This Episode Of The Public Health Epidemiology Conversations (PHEC) Podcast
In this deeply moving and energizing episode, Dr. Huntley interviews Shanthi Hegde, a rare disease advocate, board leader, and soon-to-be public health student at Brown University. Shanthi shares her powerful journey as a young woman of color living with multiple rare bleeding disorders and an immune dysregulatory syndrome, and she details the systemic barriers patients like her face at every level of the healthcare system.
Shanthi’s work spans national and grassroots levels, serving on the Board of the Hemophilia Federation of America, founding innovative young adult advocacy groups, and leading education, policy, and mental health initiatives for the rare disease and bleeding disorder community. Drawing from her lived experience and academic lens, she delivers invaluable lessons on how patient stories shape policy, why rare diseases matter for public health, and how even a single voice can spark sweeping change.
Meet Shanthi Hegde
Shanthi Hegde (she/her) is a dedicated advocate working at the intersection of rare diseases and health equity. Living with two bleeding disorders and immune dysregulatory syndrome, she brings an intersectional lens to her work. Shanthi currently serves on the board of the Hemophilia Federation of America (HFA) and has previously served on the board of the National Bleeding Disorders Foundation (NBDF). Her national advocacy efforts span multiple fronts: advancing mental health access for individuals with rare diseases through the Bleeding Disorders Substance Use and Mental Health Coalition, pushing for affordable drug pricing, championing education and research initiatives for women of color with bleeding disorders, and consulting for the ATHN-CDC Community Counts initiative.
Shanthi founded the first young adult bleeding disorders initiative in the U.S., expanding youth representation in legislative advocacy and policy discussions. In Fall 2024, she led the inaugural Young Adult Summit in partnership with Sanofi, creating a platform for education and advocacy surronding rare diseases. Additionally, she consults with both pharmaceutical and nonprofit sectors to strengthen patient advocacy programs and guide equitable drug development. Her research interests include improving access to mental health care and examining the impact of medical traumatic stress on individuals living with rare and chronic diseases. Shanthi is currently pursuing a Master of Public Health at Brown University. She holds a Bachelor of Science with honors in Psychology and Biology, and a minor in History, from Northeastern University.
Listen To This Episode Of The Public Health Epidemiology Conversations (PHEC) Podcast
Conversation Highlights
Patient Stories Drive Change: Shanthi’s personal journey, from misdiagnosis to financial and insurance hurdles, illuminates why patient perspective is vital for effective health policy reform.
Health Equity and Intersectionality Matter: Race, gender, and geography drastically influence rare disease diagnosis and care. Making equity and representative advocacy more urgent than ever.
Storytelling Humanizes Policy: Sharing real, lived experience empowers advocates, legislators, and organizations to relate, mobilize, and build bipartisan consensus around critical policy changes.
Start Small, Grow Big: Even the smallest advocacy group can blossom. Shanthi’s young adult-led initiative grew from three friends to over a hundred members, cultivating community and national impact.
Policy Wins are Possible: Recent bipartisan legislative successes like the No Copay Accumulators Act and Section 504 expansion showcase the power of coordinated patient voices and relentless advocacy.
Systemic Change Requires Collaboration: Board service, coalition leadership, and direct legislative outreach are all crucial, especially when grounded in the patient experience.
Your Voice Always Matters: No matter your background or diagnosis, every story can inspire action, inform policy, and support others still navigating the system.
“People always ask me, why care about something so few people have? But epidemiology shows us: rare diseases, taken together, affect one in ten Americans. That’s millions. This is a massive, often invisible, public health issue." — Shanthi Hegde
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DrCHHuntley LLC is a public health consulting firm that specializes in epidemiology consulting, supporting large nonprofit organizations in South Carolina, North Carolina, Georgia, Mississippi, and Florida that serve Black, Indigenous, and People of Color (BIPOC). We also provide nationwide public health consulting and epidemiology consulting support to BIPOC organizations across the United States.
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