Trial By Fire

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.