Nonprofit Podcast Rare Perspectives Season Recap

Aug 21, 2020 | News, Patient Blog

CHRONIC ILLNESS NONPROFIT PODCAST SERIES WILL CONTINUE IN SEPTEMBER

Have you listened to our podcast yet? Patient Services Incorporated (PSI) invites you to listen to the latest season of our nonprofit podcast Rare Perspectives, a series available on SpotifyApple PodcastsYouTube and Soundcloud. This season, PSI has expanded our nonprofit podcast series to include video from our conversations with some inspiring voices within the rare disease and chronic illness community.

With this newly added format, hosted by PSI’s Gunnar Simonsen, we introduce you to both familiar faces as well as some new faces, including Gwen Cooper, our new CEO.

What Is Rare Perspectives?

Since 1989, PSI has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! Our goal is to shed light on the paths that patients walk and highlight different perspectives. We hope their stories help to educate you about chronic illness.

Here’s a brief synopsis from each of our six new episodes:

Meet Bill Bellnap, IPF Patient:

We were thrilled that Bill wanted to join us for our very first Rare Perspectives episode recorded on Zoom. This was the first time Bill has ever done something like this. What a treat it was for PSI to have him as a guest. He did an amazing job!

At 76, Bill was recently diagnosed with Idiopathic Pulmonary Fibrosis, a disease of which there is no cure. In facing this, Bill is not alone. Surrounded by his wife of 52 years and his loving family, Bill has all he needs to fight this battle. In this episode of Rare Perspectives, we invite you, the listener, into a conversation about life, love, rare disease, patient assistant charities, golf, how he and his family are facing IPF during this unprecedented time of quarantine due to COVID-19, and so much more.

Meet Amee Ireland, HAE Patient:

Many times, chronic illnesses aren’t the easiest to spot. Life-threatening illnesses can be invisible to the common eye, but for the patient, they’re dangerous, burdensome and painful. Amee Ireland, a Hereditary Angioedema (HAE) patient, is one of these people.

Amee, a PSI patient, advocate and friend returns to the podcast to discuss life at home, her diagnosis, and how she saved her son’s life, which led to his diagnosis of HAE as well. You won’t want to miss this episode as Amee takes us throughout her home in real-time, even doing some canning during the interview. While not quite a cooking show, we think you’ll find the conversation real, down to earth, and, as always with Amee, encouraging.

Meet Nathan Thomson, PSI Associate of Government Relations:

In this episode, we caught up with PSI’s Nathan Thomson, who works with our government relations and advocacy team. In this episode, you’ll get to learn more about not only who Nathan is and what brought him to PSI, but also about a very critical piece of legislation that we need your help with.

During our conversation, we discuss this piece of legislation:

“Well, I think the biggest thing that’s going on right now, and if you’re a PSI patient, you may have received some emails for me over the last few weeks – there is legislation that we are hoping will be introduced in the very near future that’s going to be called the Emergency Access to Marketplace Insurance Act. In 2014, The Centers for Medicare and Medicaid Services (CMS) put out guidance that did not include nonprofit charities on the list of entities that can provide third-party assistance. So, what does that mean? That means that in 42 out of 50 states right now – if PSI helps you pay your premium or your church helps you pay your premium – your health insurer can remove you from your insurance. This is a tremendous problem, especially for charitable systems patients.”

Prepare to get educated on this timely piece of legislation and get informed on how you can help.

Meet Lisa Wright, Fabry Patient:

At the age of 49, Lisa’s lifelong mystery had finally been solved. It was just 10 months earlier that her twin sister was diagnosed with the very same rare disease, and although the discovery has brought closure to so many unanswered questions, it has also led to a thousand more.

Her diagnosis: Fabry disease

There is no cure for Fabry and treatment, and that led us to another question. At roughly $200,000 a month for infusions, how could anybody begin to afford it? We asked Lisa about her treatment, what it does and how she faced the enormity of it all.

This is Lisa’s second appearance on Rare Perspectives. In this episode, we discuss Lisa’s Fabry diagnosis, how this rare disease has impacted her life, finding hope with PSI and how she has found the strength to face each new day.

Meet Amy Jackson, PSI Patient Access Specialist:

For anyone who has ever had a question about insurance and the impact it can have on a family facing a rare disease or chronic illness, much like Lisa and her $200,000 a month price tag for treatment, you’ll want to listen to this Q&A episode as we answer some of the most commonly asked questions regarding insurance.

Join us as we welcome Amy Jackson, PSI patient access specialist. In her role, Amy is committed to always being five steps ahead in the ever-changing world of insurance coverage. You won’t want to miss this important episode.

Meet Gwen Cooper, CEO of PSI:

In this episode of Rare Perspectives, we are honored to have new PSI CEO Gwen Cooper join us. Cooper brings over 20 years of executive nonprofit experience in all facets of healthcare, having spent time leading statewide voluntary health organization fundraising and advocacy platforms to serving as an executive in provider delivery systems. Over the course of our conversation with Gwen, we cover a broad range of topics and end with a quote that will stop you in your tracks, making you pause and reflect. It is incredible how every stop along the course of Gwen’s career has led her to PSI. We are excited to have Gwen as CEO of Patient Services Incorporated for such a time as this.

Where To Find The Rare Perspectives Podcast

You can listen or watch these Rare Perspectives podcast episodes on various platforms right from your mobile device. We also invite you to write a review as well as share these episodes with your network of family, friends, and advocates.

Apple Podcasts

Spotify

Soundcloud

YouTube

Who Is Patient Services Incorporated?

Patient Services Inc., is a national nonprofit dedicated to providing financial assistance to & advocating for chronically-ill patients with unaffordable medical expenses. You can learn more about us on our “Who We Are” page.

Share Your Story

Would you like to be a guest on our small nonprofit podcast or be featured in our new patient blog? Your story matters and can both inspire and encourage many people within and outside of the chronic illness community. You can submit your story or request to be on our nonprofit podcast here.

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