IN THIS EPISODE

 

For most of us, the horror of getting a cancer diagnosis is only the beginning of a protracted, exhausting and  stressful struggle to get the coverage and care we need to survive.  Patients with life-threatening illnesses are at ground zero of a major moral conflict in America – a healthcare system that is as much about profit as it is about care. Join host Brenda Gazzar and Daniel Ray Hilsinger, filmmaker, activist, singer and songwriter as they discuss his fight to survive a rare cancer while only in his 20s. What did he learn about health care and privilege while on the chemo wards? How did his experience change his life? Why should sick people have to deal with the “overwhelming and tragic and horrible burden” of health insurance hassles while fighting to live?

 

 

SHOW NOTES

 

WE DISCUSS

 

How did you feel when you were first diagnosed with cancer?

 

“…you know, it was just so scary. It’s hard to even talk about I think and to remember, but it really just changed everything. You know, I think at that point in my life, I still had a goal or a dream to go back to New York and to make films. And, you know, that changed everything to just very simply I want to survive.” – Daniel Ray Hilsinger

 

 

How did your struggle with cancer change your life?

 

“…that’s when I think I first started learning more about healthcare justice specifically. And it’s also when I just started learning more about health and wellness and what does that mean? And you know, what impacts our health and, you know, from the food we eat to the air we breathe to water we drink to, you know, our emotional and psychological health? It’s just been really transformative. You know, I’d been learning so much since then, I think just because I, but like I needed to survive and yeah, it’s been a big change.” – Daniel Ray Hilsinger

How was your patient experience different from that of other patients you met in the chemo wards?

 

“I come from a place of privilege. I’m in a white body in this world and also a male body and I was born into a family where my dad was a doctor…not everyone was able to navigate those circumstances in the same way that I was just because of my knowledge of how to talk and things like that. And I met people really struggling and being at a time in your life when you are…literally on the edge of life or death and it’s just like an overwhelming pressure and fear also having to navigate this system that is so broken and is so confusing…even for me who had grown up in this privileged way, with all this knowledge, it was very challenging to be able to just like get through a day, you know, and it’s like …calling all the people and navigating the insurance and navigating providers and navigating the drugs and navigating all of these things is just so much. ” – Daniel Ray Hilsinger

 

 

Tell us about your song, “Rise Up,” and how it’s connected to your advocacy for healthcare justice.

 

“…it’s coming from my heart, it’s coming from like this tragic experience of being sick and feeling alone and being afraid and not knowing what to do…Parts of the song are kind of talking about my – and also different people’s – experiences navigating the healthcare system and getting sick and working and then it eventually, you know…calls out different people…and systems like pharmaceutical companies and private health insurance, and then it finishes with…a plea…for people to come together and, and rise up and make a change.” – Daniel Ray Hilsinger

Helpful Links

 

Breaking Down Barriers to Access Cancer Care Equity Cal-Matters

Many Cancer Patients Face Mounting Bills Despite Having Health Insurance US News & World Report

High Cost of Cancer Treatment, Asbestos.com

Medicaid Rules May Affect Americans’ Cancer Survival,  US News & World Report

When Adolescents and Young Adults Get Cancer, The American Cancer Society

 

 

Episode Transcript

 

Read the full episode transcript.

 

 

Guest Biography

 

Daniel Ray Hilsinger is a filmmaker, activist, singer and songwriter based out of Oakland, CA who is currently recording his debut album of all original music. After being diagnosed with bone cancer, Ray started singing and playing guitar for the first time — something he had always wanted to do, but never made time for. He is so deeply grateful to be alive and feels so fortunate and excited to share his music with you.

 

 

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Find more Code WACK! episodes on ProgressiveVoices.com, on the PV App and on NurseTalk Media. You can also subscribe to Code WACK! wherever you find your podcasts. This podcast is powered by HEAL California, uplifting the voices of those fighting for health care reform around the country. I’m Brenda Gazzar.

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