THE LGBTQIA+ COMMUNITY: Underserved in Healthcare | Carter Hemion & Simon Stones

Welcome to this episode focused on the LGBTQIA+ Community as an Underserved Community in Healthcare!  

In this episode, Caitlin and Clarinda are joined by Carter Hemion, a rare disease patient advocate, author, and artist, and Simon Stones, a patient and caregiver advocate and healthcare communication specialist.

Carter lives with a connective tissue disorder and multiple intersecting identities, including being transgender, non-binary, queer, and asexual. Their advocacy began in childhood with everyday battles associated with identity and grew into a broader mission to tackle systemic barriers in healthcare.

Simon has lived with multiple immune-mediated inflammatory diseases since childhood and has also been a caregiver for parents with pancreatic cancer and dementia. Having come out as gay only in his late twenties, he brings an acute understanding of what it means to hide a core part of yourself in healthcare and beyond and the challenges associated with that.

In this powerful conversation, Carter and Simon join our hosts to explore 

• WHY the LGBTQIA+ community is so often underserved in healthcare 
• How their experiences differ from those of cisgender, heterosexual people, and how varied the experiences can be even within the broad community
• How stigma, culture, and the political situation in many countries can make honest conversations with clinicians feel unsafe
• What safe and inclusive care can look like and positive initiatives that are driving change globally

This episode is a hard-hitting but hopeful deep dive into the healthcare experiences of the LGBTQIA+ community and what each of us can do to make care safer and more equitable for people everywhere.

Chapters

00:00:00 - Introductions and episode overview
00:01:19 - Carter's and Simon's journeys into advocacy
00:05:57 - Why the LGBIQIA+ community is underserved in healthcare
00:13:07 - How healthcare experiences differ among community members
00:17:55 - Challenges across disease areas
00:22:49 - Role of stigma and culture in healthcare experiences
00:28:20 - What equitable care would look like
00:33:02 - Initiatives driving change
00:39:03 - Patient involvement shaping community outcomes
00:43:45 - Call to action for community members and healthcare leaders

Resources and abbreviations

• Inequities in the Rare Disease Community 2024 Report from Rare Disease Diversity Coalition and National Organization for Rare Disorders
• Rare Disease Diversity Coalition (RDCC) 
• National Organization for Rare Disorders (NORD)
• FDA Accelerated Approval Pathway
• Accelerated Approval program from The RARE Foundation (formerly EveryLife Foundation for Rare Diseases)
• World Professional Association on Transgender Health
• LGBTQ+ Health Disparities
• Addressing inequalities in LGBT cancer screening coverage
• Do cancer screening rates differ across sexual orientation and gender identity?
• Advocates for Trans Equality health and healthcare
• The Trevor Project
• ILGA (International Lesbian, Gay, Bisexual, Trans and Intersex Association) World Database
• UK Equality Act 2010
• NHS England LGBT+ Health Evidence Review
• LGBT - Healthy People 2030
• Sex and Gender Equity in Researcher (SAGER) guidelines
• Simon's review project exploring sexual health, pleasure, justice, and wellbeing in rheumatology
• Terrence Higgins Trust
• DSM - Diagnostic and Statistical Manual of Mental Disorders 

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