The Medication Failed Me. I Didn't Fail the Medication. | Abigail Johnston, JD | Building the Noise Podcast

What if we've been placing the burden on patients instead of the disease?

In this episode of Building the Noise, Matt Toresco sits down with Abigail Johnston, JD attorney, metastatic breast cancer advocate, and co-host of Live From Stage IV for a deeply honest conversation about resilience, self-advocacy, and the language we use in healthcare.

After being diagnosed with stage IV metastatic breast cancer and given a limited prognosis, Abigail transformed her personal journey into a mission to help patients navigate one of life's most difficult challenges. Her perspective challenges one of the most harmful misconceptions in medicine:

"The medication failed me. I didn't fail the medication."

Together, Matt and Abigail discuss why patients should never carry the guilt when treatments stop working, the importance of asking questions, building a strong support network, finding trustworthy patient communities, and becoming an active participant in your own healthcare journey.

Whether you're a patient, caregiver, healthcare professional, or advocate, this episode offers practical advice, hope, and a powerful reminder that your voice matters.

In This Episode:

• Why patients should never blame themselves when treatments stop working
 • The power of self-advocacy in healthcare
 • How changing our language can change the patient experience
 • Why patient communities are essential during treatment
 • Navigating difficult healthcare decisions with confidence
 • Finding hope after a stage IV cancer diagnosis
 • Lessons every patient, caregiver, and healthcare professional should hear

If this conversation inspired you, please subscribe, leave a rating and review, and share this episode with someone who could benefit from Abigail's story.

🎧 Subscribe to Building the Noise for more conversations with patient advocates, healthcare leaders, and innovators working to improve healthcare through real stories and meaningful dialogue.

#BuildingTheNoise #PatientAdvocacy #Healthcare #MetastaticBreastCancer #CancerAwareness #SelfAdvocacy #PatientVoice #HealthcareLeadership #CancerSupport #Podcast

Building the Noise with Matt Toresco

WHAT 20 SURGERIES TAUGHT ME ABOUT LIFE

Most people would be broken by 20 surgeries.

Matt Hay lost his hearing, faced brain tumors, endured facial paralysis, and spent years navigating a rare disease that affects only a tiny fraction of the population.

Yet today, he calls himself one of the luckiest people in the world.

In this powerful conversation, Matt shares the lessons he learned through adversity, the moment that transformed him from a patient into a patient advocate, and why suffering doesn't have to define your future.

We discuss rare disease, resilience, healthcare, purpose, hearing loss, patient advocacy, career setbacks, and the surprising mindset shifts that helped Matt build a meaningful life despite overwhelming challenges.

If you've ever faced a difficult diagnosis, major setback, chronic illness, or simply wondered how people find purpose after hardship, this episode is for you.

ABOUT MATT HAY

Matt Hay is a rare disease patient advocate, author, TEDx speaker, public health professional, and advocate for patient-centered healthcare. After living with Neurofibromatosis Type 2 (NF2), undergoing 20 surgeries, losing his hearing, and relearning how to navigate life with significant health challenges, Matt dedicated his career to helping patients and families find support, community, and hope.

KEY TAKEAWAYS

• Why Matt calls himself "the luckiest guy in the world"
• The life-changing moment a mother told him, "I'm glad you exist"
• How 20 surgeries changed his perspective on life
• The lessons he wishes he knew at 22
• Why patient advocacy matters more than most people realize
• The hidden loneliness many rare disease patients experience
• How he taught himself to hear again through music
• The mindset shift that transformed his career and purpose
• Why sharing your story can change someone else's life
• What healthcare organizations still need to learn from patients

WHY THIS MATTERS

Millions of people live with chronic illness, rare disease, hearing loss, or life-altering health conditions. Matt's story is a reminder that resilience isn't about avoiding hardship, it's about finding meaning through it.

Whether you're a patient, caregiver, healthcare professional, advocate, or someone facing a difficult chapter in life, this conversation offers practical wisdom and genuine hope.

👍 If you enjoyed this episode:
• Like this video
• Subscribe for more conversations on healthcare, patient advocacy, resilience, and leadership
• Share this episode with someone who needs encouragement
• Comment below: What is the biggest lesson adversity has taught you?

#RareDisease #PatientAdvocacy #Resilience #Healthcare #PersonalGrowth #ChronicIllness #Leadership #Podcast

Building the Noise with Matt Toresco

Most people only see the diagnosis. They don’t see what chronic illness quietly takes from someone’s identity, relationships, confidence, and everyday life.

In this powerful episode, patient advocate Shelley Gerson shares her journey from surviving one of healthcare’s darkest moments to becoming a voice for patients inside the biotech industry itself.

From being told “women don’t have hemophilia” to helping shape patient-centered healthcare programs, Shelley opens up about what patients truly wish doctors, insurers, and pharmaceutical companies understood.

We discuss:

• The hidden emotional cost of chronic illness
• Why patients often feel dismissed by healthcare providers
• The truth about patient advocacy and biotech
• Medical gaslighting and learning to self-advocate
• Clinical trials, trust, and healthcare innovation
• Turning pain into purpose

Shelley also shares deeply personal stories about surviving the HIV/hepatitis blood contamination crisis within the hemophilia community — and why she ultimately chose to work inside the very industry she once distrusted.

If you or someone you love lives with chronic illness, autoimmune disease, a rare disease, or has ever felt unheard by the healthcare system, this conversation will resonate deeply.

🎧 Subscribe for more conversations around healthcare, advocacy, chronic illness, and patient empowerment.

👇 Let us know in the comments:
What’s one thing you wish doctors better understood about living with chronic illness?

#ChronicIllness #PatientAdvocacy #HealthcarePodcast #RareDisease #Hemophilia #MedicalGaslighting #Biotech #InvisibleIllness #Healthcare #PatientVoice

Building the Noise with Matt Toresco

Why are patients losing trust in the healthcare system and who’s actually listening to them anymore?

In this episode, healthcare advocate Brandon Macsata joins us for a raw and honest conversation about patient advocacy, the failures of modern healthcare, insurance denials, AI in medicine, HIV activism, and why patients are still being excluded from decisions that directly impact their lives.

Brandon has spent over 30 years fighting for patients at the intersection of healthcare policy, HIV advocacy, and public health reform. From the early days of the AIDS crisis to today’s debates around AI-driven healthcare decisions, this conversation dives deep into the systems, incentives, and policies shaping patient care in America.

If you’ve ever felt ignored by the healthcare system, frustrated with insurance companies, or concerned about where medicine is headed next — this episode is for you.

In This Episode:

•  Why patients don’t trust healthcare anymore 
•  How HIV advocacy changed modern healthcare policy 
•  The hidden reality of prior authorization denials 
•  Why AI in healthcare could become dangerous 
•  How patient voices are being replaced by systems 
•  The truth about healthcare advocacy funding 
•  Why “Nothing About Us Without Us” still matters 
•  The real battle over 340B and patient access 
•  How grassroots advocacy actually changes policy 

About Brandon Macsata

Brandon Macsata is a nationally recognized healthcare and HIV/AIDS advocate with more than three decades of experience in patient advocacy, healthcare policy, and public health leadership. He serves as CEO of ADAP Advocacy and PlusInc, focusing on patient access, health equity, HIV policy, and healthcare reform.

Why This Conversation Matters

Healthcare impacts every person eventually but too often, patients are left out of the conversation. This episode explores how advocacy movements shaped healthcare as we know it today, why trust in the system is eroding, and what patients can do to reclaim their voice.

Building the Noise with Matt Toresco

What if life-saving medicine already exists… but patients still can’t get it?

In this episode, Sanofi’s Eric Racine breaks down the real crisis in healthcare and it’s not innovation. It’s access.

From personal tragedy to leading patient advocacy at one of the world’s largest pharmaceutical companies, Eric shares why millions of patients still fall through the cracks and what needs to change.

Eric Racine is a global leader in patient advocacy at Sanofi, with deep experience across healthcare systems worldwide. His work focuses on ensuring patients don’t just benefit from innovation but can actually access it.

Building the Noise with Matt Toresco

What if your diagnosis wasn’t the end… but the beginning?

After being diagnosed with HIV, everything changed but not in the way you might think. This powerful story is about finding purpose, strength, and a new life when it felt like everything was over.

Sometimes the hardest moments become the turning point.

We dive into:

Why patients feel ignored and unheard
How pharma and healthcare systems lose trust
The hidden struggles in rural healthcare
Why community-based care is the real solution
What needs to change to put patients first

This isn’t just a conversation, it’s a wake-up call.

If you’ve ever felt rushed, dismissed, or like “just another number” in healthcare… this is for you.

Building the Noise with Matt Toresco

Our goal is to help patients navigate the complex and often confusing world of the US healthcare system. In each episode, we discuss important topics, such as how to choose a healthcare provider, how to understand your insurance coverage, & how to advocate for yourself as a patient. We also interview healthcare experts and patients to provide a range of perspectives on these topics.

Building the Noise will also provide transparency into the many different elements of the healthcare system including: 
-Pharmaceutical Companies
-Biotech Companies
-Medical Device Organizations
-Insurance Companies (Payers)
-Pharmacy Benenfits Managers (PBMs)
-and much more!

We will conduct live interviews with industry leaders to provide you with transparency on how these organizations are looking to aid patients and change the healthcare system for the better. By conducting these deep, hard-hitting interviews, I hope to gain a better understanding of the work of these leaders and how they are working to support and empower patients!

Building the Noise with Matt Toresco

We sit down with Wendy Erler of Sarepta Therapeutics to understand how she developed her passion for patient advocacy, the value of engaging the patient voice and the need for the industry to engage patient communities further to maximize the impact of their lived experience. 

Building the Noise with Matt Toresco

In this introductory episode, Matt Toresco introduces his audience to what they can expect from the podcast, why he chose to start one, what he hopes to accomplish in building the noise, & what is to come!

Building the Noise with Matt Toresco