Patients Have Power!

In our final episode of Trial by Fire, Michele Rhee joins us in discussing her experience as a clinical trial participant and industry expert. Michele is an active patient advocate for cancer and rare disease and has supported the development of patient advocacy functions for multiple pharmceutical companies.  

In this episode, clinical study participant, Susan Lovelace, shares her trial journey with our favorite duo.  Susan describes her experience living with a rare condition, having to travel to a study site, and interactions with her trial team.   

In this episode, our Trial By Fire duo interviews Scott Schliebner. Scott is a clinical drug development executive with over 25 years of experience across the CRO, biotech, and non-profit sectors. They cover the gap between drug development and patient needs and the unique challenges that the industry faces. Transcript - Episode 3  

In this week's episode, Aaron and Brittany are joined by Anne Marie Mercurio who is a patient research advocate primarily in oncology. They discuss the struggles of caregiving in the COVID-19 pandemic, listening to the patient experience and re-designing clinical trial protocols to fit patient needs. 

The Clara Team is excited to introduce our limited podcast series: Trial by Fire, which chronicles candid clinical trial experiences and discusses how we can tackle these issues as an industry and work towards creating a system that takes into account a diverse set of patient perspectives. The idea for this podcast was sparked when a patient reached out to our team to ask for support because she could not eat the food the site was providing for participants, and was considering dropping out of the study. We knew she wasn't alone – and we wanted to hear more direct patient experiences with clinical trials, and to share these critical insights with our community.

Our hosts, Aaron and Brittany, are joined by Richie Kahn in our first ever Trial By Fire episode. Richie is a clinical researcher, patient advisor, and health policy professional. In this episode, Richie touches on his experience living with Wolfram syndrome, finding support from Paralympic athletes, and his insights into patient engagement in clinical trials. Transcript - Episode 1

Peter lives with multiple chronic conditions but has spent the past two years tirelessly advocating for patients everywhere by taking the morning train from his home in New York City to Washington D.C. Aaron talks to Peter about what advocacy has accomplished, where advocacy will go next, and the things we can look forward to in 2019. 

Aaron interviews Dr. Alex Solyom, senior medical director at Enzyvant, about his team's work in developing a new therapy for an ultra-rare genetic condition known as Farber disease.

A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.

Lilly chats with the ladies of the MS Minority Research Engagement Partnership Network (which is a bit of a mouthful!) Holly, Anita, and Shawn about their work in increasing inclusivity and access in scientific research. 

Maria Thomas joins Lilly in honor of Hyperhidrosis Awareness Month to talk about her “life as a puddle” and inspiring advocacy work.

To discuss the healthcare issues that are at stake in the upcoming midterm elections, we speak to lawyer, healthcare advocate, and professional patient, Matt Cortland. As a person living with chronic illnesses, Matt knows all too well the necessity of equitable and robust access to care in everyone's lives; as a lawyer with a Master's in Public Health, he knows the issues and the policies inside and out. Here's our conversation about American healthcare and the things that are at stake in November.

Welcome to Season Two of the Patients Have Power Podcast! After a summer of planning and plotting, we're back and expanding the conversation beyond patient stories to include stories from healthcare and healthtech. To kick off the new season, Lilly sits with Chris Snider, a diabetes advocate, blogger, podcaster, and the community manager at Tidepool.org, an open-source and not-for-profit company working to make diabetes data more accessible. Chris chats about his work, maturation as an advocate, and fighting for access to better and more inclusive care.  

Peter Morley (@morethanmySLE on Twitter) is using his story to help fight for healthcare. Although he was once a very private person who never even told his friends he had cancer, Peter found his voice after the 2016 Presidential election, when he felt called to fight to protect the gains of the Affordable Care Act. In this wide-ranging conversion, we discuss the power of a story, taking 3:25AM trains from NYC to DC, and how his first-ever trip to DC resulted in making a John McCain staffer cry. 

Ashley Boynes-Shuck is a writer, patient advocate, and a powerhouse voice for those who live with chronic conditions. Among other things, she's a published author who just finished her fourth book, an animal lover and advocate, a lover of fashion who won a fashion award from the Pittsburgh Fashion Hall of Fame, an avid birdwatcher...and somehow she found time to chat with Lilly about her journey, her ongoing projects, and her life as one-half of a power couple.

"My heart is in the wrong place in my chest."  Molly Sarah chats with Lilly about her long road to diagnosis, her stint as a roller derby athlete, and why her rheumatologist shouted, "Oh my god, I got one!" when he first met her. 

Savannah was told she had depression...when, in fact, she was living with arthritis. Now, she uses her condition as an opportunity to give back to research through participation in clinical trials, patient advocacy, and sharing her story.  

Dan Sfera - aka The Clinical Trials Guru - has been working in clinical trials since 2005. Over the years, he's seen how patient recruitment has changed...but, mostly, how it has remained the same.  Dan and Aaron talk about the need of new technology, processes, and philosophies in patient recruitment, and how 21st century tactics can make clinical trials participation more patient-friendly. 

Leilani is an advocate in the transplant and chronic illness community. She stopped by the Clara offices to talk about her experience receiving a heart transplant, what drives her to her advocacy, and how patients need to be treat like the user of any healthcare system. 

Lilly and Aaron break down a renewed effort to undermine the Affordable Care Act by stripping out the legislation's protections for those living with pre-existing conditions (a list which includes...acne and...(checks notes) pregnancy?). They also chat about the new Right to Try legislation that has recently passed and the various thoughts the patient and pharmaceutical communities had about it.  Mentioned on the pod:  Follow @mattbc, aka Medicare Matt, Esq, who is a lawyer living with a chronic illness who fights for patient rights - his analysis of legislation and the latest legal battles are incredibly helpful.  If you want to get more involve and make your voice heard, a great tool is 5calls.org. It'll find your representatives, their phone numbers, and even provide scripts for you to use when you get through to them.    Patients have power; make sure you to exercise yours everyday. 

Lilly sits down with Anna Evangeline - aka Six Hips (sixhipsandcounting.com) - for a frank and open chat about advocacy and her own health journey. Anna details her multiple surgeries, the long hospital stays and fighting for the care that she needs, the anger that she still feels about the things that have happened, and how honesty and raw storytelling helps spread stories more effectively. 

In this episode, I had the absolute pleasure of sitting down with Michele Rhee, Enzyvant’s Head of Patient Affairs. A simple job title doesn’t quite do her story justice: Michele’s road to patient advocacy involves a cancer diagnosis, a collapsed lung, a heart tumor, tears shared with her mother, and a fight to get the treatments that she knew she needed. And now, she uses all the experience she gained through her life as a patient and an advocate at Enzyvant. Michele and the Enzyvant team work to find a treatment for Farber disease, a rare disease that has about 80 reported cases world-wide [1], through patient engagement and education. We chat about how much she loves her work, how lucky she feels, and the power of a story to change the world. Michele is one of my role models in patient advocacy and I think you’ll see why as you listen to our chat! Zielonka, M et al. Genetics in Med. 2017; a cross-sectional quantitative analysis of the natural history of Farber disease

When we were planning out the Patients Have Power! podcast, there was one name kept popping up as the perfect first guest to have visit Clara Studios. So you can imagine that we were absolutely thrilled that Amanda found time in her busy schedule to visit us for a glass of wine and some honest, raw, hilarious, inspiring talk. 

Kelby joins Lilly to chat about her diagnosis and health journeys, and how living with a chronic condition is just like having a horrible roommate. 

Lilly heads to Vegas to attend the first-ever Crohn's and Colitis Congress. Along the way, she interviewed the ever-inspirational Brooke Abbott (crazycreolemommy.com) about advocacy, mothering, and a busy life with a chronic condition.  

@WheezyNurse - aka Amber - sits with Lilly to discuss the importance of patient-centricity and compassion in the world of healthcare, and especially in nursing. 

Another interview from Lilly's trip out to the lights, glitz, and glamor of Las Vegas. Aaron Blocker chats with Lilly about his health journey and how that led to a life in advocacy. 

Rebecca Black opens up about her journey through misdiagnoses, parking lot cry sessions, and learning to grow empowered in her advocacy. 

Aaron Jun - Head of Marketing at Clara Health - joins the pod for the first time to chat with Lilly about the incredible financial demands placed on patients. 

Ali Feller - also known as Ali On The Run - joins Lilly to chat about her marathoning and her own amazing podcast, the ways in which her Crohn's and colitis have impacted her life, and how her diagnosis at the age of seven ruined a family vacation. 

Wherein Lilly and Aaron chat about the exciting new therapies going into trials that focus on methods beyond drugs, such as stem cell and fecal transplants, and diet and lifestyle changes. Also: How stem cells are like Minions, the struggles of finding the right condiments in the grocery store, and a fierce debate about Aaron's vegetarianism.      

Adi speaks to Lilly about taking a year off to fight a brain tumor with a clinical trial, multiple specialists, and a surgery on his brain...while he was still awake!

Erika - a friend who found us through Instagram - became the first guest to come through the brand new Clara offices for a podcast! Erika is the embodiment of patient power. She sits down with Lilly to talk through her self-diagnosis journey and how she learned to own her health.    

Lilly and Aaron share another glass (or two [definitely two]) bottles of wine as they talk about the common questions that patients tend to ask about clinical trials. Everything from "I don't want to be a guinea pig" to the surprising number of trials studying orgasms are discussed.  Also in the episode:  Aaron gets fired about about pharma lobbying; The Backstreet Boys released a new song?;  PatientsForAffordableDrugs.org;  Subscribe to our Youtube channel!; And submit to our $10,000 writing contest.  

Aaron and Lilly catch up over a glass (or two) of wine to talk about her keynote speech at the Interdisciplinary Autoimmune Summit, where Lilly used her platform to talk about administrative burdens placed on patients. And we're now a video podcast! You can watch us at our Youtube channel here: https://bit.ly/2FJyqzX