What happens when life-saving treatment becomes life-altering — and the systems meant to protect families move too slowly to prevent harm? 

In Part 1 of this powerful two-part series, Dana Kuhn shares the deeply personal story that would shape a lifetime of advocacy. Set against the early years of the AIDS epidemic, this episode traces Dana’s journey from a newly ordained minister and young father with mild hemophilia to a caregiver navigating fear, stigma, and devastating loss. 

After a routine injury leads to his first factor infusion, Dana becomes critically ill — contracting hepatitis through the blood supply at a time when safety systems lagged behind emerging risks. What follows is a cascade of uncertainty: an HIV diagnosis, incomplete public health information, and the heartbreaking realization that his wife is also gravely ill. 

Through moments of medical neglect, visible stigma, and advocacy born out of desperation, this episode honors the caregivers who fight when fear takes over rooms meant for healing, and it lays the emotional foundation for the advocacy work that would eventually become Patient Services, Inc.

What You’ll Learn 

• How early blood safety gaps impacted families living with hemophilia in the 1980s 
• What stigma looked like inside hospitals during the early AIDS epidemic 
• Why caregiver advocacy often begins in moments of fear and exhaustion 
• How grief and love can coexist — and reshape a person’s purpose 
• What it means to live with loss that never fully fades, only changes form 

Episode Highlights 

• 00:00 – Introducing Dana Kuhn and the story behind his return to advocacy 
• 01:12 – A life interrupted: a basketball game, a broken ankle, and first factor exposure 
• 03:19 – “Something didn’t feel safe”: early warnings about the blood supply 
• 05:06 – When illness enters a home, everyone becomes a caregiver 
• 07:06 – “Because I have HIV”: fear enters the exam room 
• 08:58 – Advocacy when politeness no longer matters 
• 11:22 – Saying goodbye through hand squeezes 
• 12:23 – Grief that doesn’t leave — only changes 
• 13:39 – A turning point: choosing to help someone else live 

Meet the Guest 

Dana Kuhn, PhD, is the founder of Patient Services, Inc. (PSI), an organization established in 1988 to help families living with rare and chronic illnesses access life-saving treatment when insurance coverage and cost become barriers. His work has played a critical role in financial assistance models and blood safety advocacy in the United States. After retiring in 2018, Dana is once again stepping forward as federal blood safety infrastructure faces renewed challenges. 

Tools, Frameworks, or Themes Explored 

• Caregiver advocacy under crisis 
• Medical stigma and systemic fear 
• Grief as a lifelong companion 
• Trusting intuition when systems fail 
• Turning personal loss into collective action 

Closing Insight & CTA 

“The hurt never goes away. You just learn how to live with it — and how not to forget the wonderful memories.” - Dana Kuhn 

This episode is a reminder that advocacy often begins in the most private moments of pain — and that protecting families requires listening to the stories that history once tried to silence. 

Continue the journey in Part 2, where Dana’s story shifts from private grief to public confrontation — and the fight for blood safety becomes a national reckoning. 

Resource Links 

• Dr. Dana Kuhn: Sharing His Thoughts in a Letter to our Community: https://www.hemophiliafed.org/dr-dana-kuhn-sharing-his-thoughts-in-a-letter-to-our-community/ 
• Major Health Policy Changes Ahead: https://www.hemob.org/resource-library/july-28-2025 
• The Coalition for Hemophilia B: https://www.hemob.org/ 
• Patient Services, Inc. (PSI): https://www.patientservicesinc.org/ 
• Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/